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Partnership for Progress
NOTICE is hereby given that the General Assembly Meeting of the EHA will be held on the 11th and 12th April, 2008, in Madrid, Spain.
The venue is:
Hotel Intercontinental, Paseo de la Castellana, 49 28046 Madrid, Spain
Tel: + 34 91 700 73 76
Fax: + 34 91 700 73 13
Web: www.european-headache-alliance.eu
Click here for the English Programme
Click here for the General Assembly Meeting Agenda
Note: Each ordinary member who is not able to attend the General Assembly, may give, in writing or by email or fax, delegated authority to one of the other ordinary members to represent him/her and vote on his/her behalf at the General Assembly. The member who is thus appointed must be present at the meeting. However, no ordinary member may accept proxy of more than one other ordinary member.
The European Huntington’s Disease Network (EHDN) is committed to facilitating research on Huntington’s disease (HD). A major aim of the network is to provide an unparalleled collection of clinical data and biomaterials that will enable research projects to be conducted on a scale that has not previously been possible. In order to take full advantage of this unique resource, the EHDN is committed to an ‘open access policy’ and to fostering collaborative projects between its members. To this end EHDN encourages its members to establish working groups (https://www.euro-hd.net/html/network/groups) to focus on specific HD research projects essential to the overall goal of developing treatments for HD. In parallel, EHDN is building the infrastructure required to conduct systematic clinical trials of potential therapeutics.
There are three schemes through which EHDN members can apply to gain access to the resources of EHDN.
Click here for more details of these schemes and the application procedure
The Report of the latest EMSP Conference held in Noordwijk (NL) in November 2007 reflects the progress made in the endorsement process of the “Code” and consensus papers.
The Noordwijk Workshop was organised to focus on the development of lobby strategies and tools to implement the “Code” on national level.
Having obtained political endorsement of the “Code” and its Consensus Papers by the European Institutions, the Noordwijk objective for EMSP was to translate what has been achieved on European level into national legislation and daily practice.
The report which is now available covers the promotional aspects of the “Code”, the MS Barometer and some new tools to be used on national level (f.i. for taking advantage of media campaign).
Member societies will receive a printed copy of the report while Noordwijk participants and MS supporters can print from the site.
Click here for the EMSP Noordwijk Conference Report 2007
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The European Medicines Agency (EMEA) has engaged successfully in dialogue with European patients and consumers
As the European Union’s official body for the evaluation and supervision of medicines, the EMEA has a wealth of information to share with patients and consumers about the latest developments in this field. At the same time patients and consumers want a greater say in the development of policies and strategies that govern the pricing, availability, research, testing and regulation of new medicines and treatments. This is why EMEA is integrating them in its activities by creating information and participation mechanisms. A growing number of patients’ and consumers’ organisations (not-for-profit organisations involved at EU level) are able to participate in EMEA activities and ensure that its views are reflecting the needs and concerns of patients and consumers across Europe. EMSP being actively involved in the EPF (European Patients’ Forum) activities, Christoph Thalheim, as secretary general of EMSP, has been appointed as a member of the Patients’ and Consumers’ Working Party (PCWP), representing the EPF. This permanent forum for interaction is counting umbrella organisations (e.g. EFNA – the European Federation of Neurological Associations) together with organisations having a particular focus on a specific disease (e.g. Alzheimer Europe).
We will keep you informed about major interactions. If you want to know more about the EMEA committee and its working parties please go to www.emea.europa.eu/htms/general/contacts/CHMP/CHMP_WPs.html
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Brussels, June 1, 2007
EMSP Conference in Brussels calls for equal access to therapy and care throughout Europe and launches the “Multiple Sclerosis Information Dividend” project.
“It must be assured that MS patients throughout Europe are cared for and have access to treatment with suitable medicines at the earliest possible date, so that the quality of their life is improved. The achievement of such an equality of opportunity is our responsibility". This declaration by Ulla Schmidt, the German Health Minister and current Chairman of the EU Health Council, was probably the most important message during this two-day conference of the European Multiple Sclerosis Platform (EMSP), which was held in Brussels launching the EU funded "Multiple Sclerosis Information Dividend (MS-ID)" project.
Together with the President of the European Parliament, Hans-Gert Pöttering, Minister Ulla Schmidt had taken on patronage of this innovative conference, giving the starting signal for the "Multiple Sclerosis Information Dividend - MS-ID", a project being financed by the European Commission within the framework of the Public Health programme. The key aim of this two-year project is the piloting and preparation of a European MS register. Existing documentation systems are to be compared and evaluated, for the purpose of – among others - the assessment of socioeconomic aspects of MS at national level. Another goal of the MS-ID project is to press for the implementation of the "European Code of Good Practice". These guidelines are designed to ensure that people with MS are treated and cared for on the basis of the best management possible, that they retain their jobs, that they remain in the mainstream of society, and that they receive sufficient help and support in order to best cope with MS in their lives.
The commitment of the German Minister of Health to supporting EMSP’s demands and those of its colleagues in European Union member states, which include measures for raising awareness and the implementation of these guidelines, is viewed as a major success of the conference. It also came to light that the German Minister of State for Europe, Günter Gloser, had once more confirmed the commitment of the German EU Presidency in the European Parliament, for contributing to the dissemination and implementation of the "Code of Good Practice".
The President of EMSP, Dorothea Pitschnau-Michel, who is also the Secretary General of the German Multiple Sclerosis Society, welcomed more than 160 participants at the conference, including the representatives of 32 national MS societies who are members of EMSP. Other participants and speakers were internationally well known scientists, political decision-makers, representatives of the legal and private health insurance funds and international journalists. During her speech, Mrs. Pitschnau-Michel presented the European MS Barometer, which gave an overview of the current situation of people with MS in the European member states, strikingly emphasising the demand and need for equality of opportunity.
In Poland, for instance, only 1 percent of Polish MS patients are treated with disease modifying drugs that can have an impact on the disease, while this is approximately 50 percent in Sweden. Ireland for instance only has 16 neurologists for the treatment of an estimated population of 7.000 people with MS, while Iceland is in the privileged position of having 330 MS patients treated by 18 neurologists. The newest treatments for severe cases of MS are covered by some health fund schemes, and are being reimbursed in Germany and several other EU member states, while patients in the UK must take legal action to try and recover the costs of the therapies they undergo.
During the course of the conference, numerous MS experts of international renown provided a comprehensive overview of the status of MS-relevant subjects. Research and therapy reports were greeted with unanimous approval and were given the equivalent attention as the descriptions provided by people with MS of their lives. A detailed presentation was also made of existing data collections, and of the costs that are incurred over the course of the treatment of MS, including recommendations on how these can be reduced when early and adequate treatment and care are obtained.
Four workshops concluded this conference, where such subjects as therapy options, the costs of the illness, the role of national MS associations in the implementation of the Code of Good Practice, and the promotion of the principles of Quality of Life were covered, leading to the following key messages:
More than 500.000 people with MS ask their politicians to make this happen NOW!
The European Network for Research on Alternating Hemiplegia (ENRAH) brings together patients and their families seeking support and improved healthcare for those suffering from Alternating Hemiplegia in Childhood (AHC). ENRAH collaborates with all patients, patient organisations, research groups, and other interested parties across Europe in order to share experiences, concerns, information, knowledge, understanding, and tools that assist AHC patients and their families.
ENRAH was initiated by the parents of an AHC-affected child through a networking project funded by the European Commission within the 6th Framework Research Programme from April 2005 through June 2007. In April 2003 ENRAH registered as not-for-profit association under the Austrian Vereinsgesetz (Reg.Nr.: ZVR 542743764).
The primary objective of ENRAH is to establish a platform for care and research regarding AHC in order to achieve the following objectives:
In order to achieve these objectives ENRAH develops a network of communication and information sharing within an overall ethical, social, and scientific framework. ENRAH engages in activities that contribute to promoting public awareness and increase attention regarding AHC and related rare childhood neurological conditions.
The primary achievement of ENRAH is the realisation of a pan-European platform for AHC driven by patients and working in close cooperation with carers and researchers. As ENRAH grows and develops towards the future, it builds on the following accomplishments:
ENRAH is driven by patient needs, based on expertise and knowledge and supported by experienced EU project managers.
The primary goal of ENRAH is to improve the care and treatment of AHC patients, eventually finding effective diagnostic, therapeutic, and prophylactic interventions. ENRAH works toward this goal by:
You should join ENRAH for two reasons:
ENRAH approaches AHC as a shared concern in which all members are expected to receive from the organisation as well as give (by sharing experience, information, and/or expertise) to the organisation. ENRAH exists for AHC patients. If this is a concern of yours, we hope you will also bring your needs and interests to ENRAH.
ENRAH Membership is open to application for individuals and for legal entities looking for European-level support for AHC patients and for those who have something to bring to AHC. ENRAH recognises three levels of involvement in its activities:
Your application will then be reviewed by the ENRAH Executive Committee according to ENRAH's Statutes and Byelaws, which can be viewed online at www.enrah.net.
Updated information on the ENRAH Association is provided on www.enrah.net . You can also send an e-mail to the Secretary General, Dr. Tsveta Schyns, at ts@enrah.net or call +43 1 9200075.
This campaign is one of the most ambitious projects that the EPDA has ever embarked upon. After only seven months’ work, it was launched in Madrid at the EFNS Congress on 25 August 08. Headed up by Susanna Lindvall, vice president, ‘Parkinson’s is visible – make it livable’ aims to raise awareness about the impact that Parkinson's has on daily life. By improving the understanding and knowledge relevant for all stages of the disease, it will highlight the challenges experienced by people with Parkinson’s; raise awareness, especially its consequences; influence decision makers and raise funds for resources, management and research projects.
It has been supported by many external organisations including the European Federation of Neurological Societies and World Federation of Neurology and also the treatments industry - GlaxoSmithKline, Medtronic Foundation, Merck Serono and Solvay Pharmaceuticals.
Click here to see the Campaign Flyer
For more information please see http://www.parkinsonsawareness.eu.com/
“Choosing the best course through Parkinson’s in terms of both mental and physical health can be confusing. The doctor’s advice will be an important tool in making those decisions, but it is not an easy task for them either.
Firstly the symptoms of Parkinson’s are different in everyone, secondly, they can vary within each person from day-to-day, hour-to-hour, even minute-to-minute and thirdly, people’s expectations of their own quality of life differ widely – things that are important to one person may not be so important to another.”
Tom Isaacs, EPDA Young Onset representative
The PDA is an educational tool to encourage communication and concordance and has been developed with the assistance of the EPDA membership, healthcare professionals and the treatments industry.
Launch date: World PD Day 2009.
Following three years’ collection of video footage at EPDA conferences and workshops - held in Argentina, Ireland, Italy, Japan, Luxembourg, Slovenia and South Africa - of people demonstrating their tips and tricks, the EPDA has completed its first CD-ROM, launched in Seville in May of this year.
The simplicity and rawness of the footage captures spontaneous moments and authentic demonstrations by people with Parkinson’s of various coping strategies they have developed.
These make their daily living easier when the effectiveness of medication decreases, and when symptoms re-emerge before it is time to take the next dose or medication (wearing off) or involuntary movements, like dyskinesia, appear.
For more information see www.epda.eu.com/copingStrategies
Launched at the EPDA General Assembly in Stresa, Italy in 2007 this on-line survey, focused on the realities of living with Parkinson’s both ‘day and night’, and was supported by GlaxoSmithKline. It was completed by nearly 3,000 people across 30 countries, and closed at the end of February. Results were shared with each of the participating organisations so that they could build these into their World PD Day celebrations, assisting with the aim of raising awareness about what it is like to live with Parkinson’s on a daily basis.
Hungary welcomed Sweden in September 08 when the first EPDA Eastern European Road show came to town.
A team of Swedish professionals joined Hungarian healthcare professionals and people with PD and their families to share experiences and education.
Supported by G E Healthcare and Solvay Pharmaceuticals, this Eastern European Road show, a sharing of knowledge and expertise by one national association buddying with another, has been an ambition of the EPDA for four years.
Throughout the five day event, the team visited the Peto Institute in Budapest where Conductive Education was developed over 40 years ago and has been widely established in several countries including Australia, Canada, Germany, Israel, UK and the USA.
Lizzie Graham reports on this exciting new ‘buddying’ initiative.
The EPDA’s website Rewrite Tomorrow www.rewritetomorrow.eu.com/en/default.htm continues to grow on a monthly basis. Rewrite Tomorrow, supported by Medtronic Europe seeks to bridge the current patient information gap for Parkinson’s management.
Launched at the EPDA 2006 General Assembly, the EPDA has since then been trying to pull together the abundance of information existing on Parkinson’s management.
This is a mammoth task and one that is ongoing daily. Thanks to the constant support and help of experts, information is being gathered on important issues such as skin and sweating, communication involving facial expressions, body language, speech, drooling etc., and psychological problems including anxiety, apathy, memory and depression.
Sections are written in a user friendly style and include Parkinson’s symptoms, both motor and non-motor; complementary therapy; occupational therapy; and physiotherapy including videos and patient histories; medication; surgical treatments; and Deep Brain Stimulation.
With so much information available, Rewrite Tomorrow is expected to continue to grow for some considerable time. The EPDA hopes the website will prove to be a valuable resource not only for people with Parkinson’s and their families, but also healthcare professionals who are non Parkinson’s specialists, by enabling them to better understand Parkinson’s, and signposting to the various people and organisations that can help, particularly when symptoms become increasingly resistant to medication.
New information is added to the website on a monthly basis. See www.rewritetomorrow.eu.com
For further information about the EPDA and its activities, please contact info@epda.eu.com or go to the EPDA website: www.epda.eu.com
Sara Koe’s will was, in conjunction with that of her husband, Michael Koe, the establishment of The PSP Association…
The PSP Association was set up as a Charity in 1994, a year before Sara’s early, tragic death at only 51 years of age from PSP.
Michael has now written a book “Charity Begins at Home”. This tells of the heart-breaking tragedy that befell his beautiful wife, Sara, Michael himself and his family, as a result of Sara developing the devastating neuro-degenerative disease Progressive Supranuclear Palsy [PSP] for which there is no treatment. The disease itself is terminal, only after slowly and insidiously robbing its victims of their balance, movement, speech, eyesight and swallowing, yet the intellect remains intact. It can best be described as a “living hell”. The book then explains how Sara and Michael created the Charity to help others, and how Michael, after Sara’s death, then grew it from “one man and his dog” (at the time a Staffy called Wilson) to one which now has 21 people and nine volunteers working for it. The Charity has now helped over 3,000 people, and invested, to date, over £2m into research into this disease.
The charity’s objectives are to:
If you would like to help The PSP Association by buying a copy of the book at £14.99 + £3.50 P&P for advance copies ordered by October 31st 2008, or at £20-00 + £3.50 P&P for orders received by PSP after this date, proceeds after costs going to The PSP Association, please click here to get a copy of the order form
Dr Luke Massey, The PSP Association’s Research Fellow based at The Sara Koe PSP Research Centre in London, has won The International Movement Disorder Society’s 2008 Junior Award for excellence in clinical research.
Dr Massey will now travel to Chicago to receive this prestigious award and present his research to some 3500 leading scientists and clinicians from all over the world at the 11th International Congress of Parkinson’s Disease and Movement Disorders on Wednesday 25th June.
PSP (Progressive Supranuclear Palsy) is a fatal brain disease that gradually robs people of their ability to walk, talk, eat, drink and see. Patients become trapped inside their own bodies unable to communicate yet remain mentally alert. Death occurs on average within five to seven years of onset of the disease, the last few years of which are spent in a wheelchair or bed-bound. The cause of PSP is unknown and there is no effective treatment to slow or halt its progression.
Diagnosis is based on the patient’s symptoms with MRI (magnetic resonance imaging) scans used to exclude other diseases. Lack of a diagnostic test for PSP results in frequent misdiagnosis with symptoms, particularly in the early stages, often thought to be those of Parkinson’s disease, Alzheimer’s disease, a stroke or dementia. Records held by The PSP Association indicate that some 3 out of every 4 cases of PSP are misdiagnosed leading to inappropriate treatments which can exacerbate problems.
Dr Massey’s work focusing on the potential use of high powered MRI (9.4 Tesla) to detect changes in the brains of people with PSP offers hope for better and earlier diagnosis of PSP. An area of the brain called the subthalamic nucleus (STN) deteriorates and shrivels in PSP but this region of the brain cannot be seen clearly on scans using conventional MRI (1.5 Tesla). Using high powered MRI (9.4 Tesla) Dr Massey has been able to define the boundaries of the STN in post mortem brain. Work is continuing to detect other key areas of change in the PSP brain.
Dr Luke Massey said “I am absolutely delighted to have won the International Movement Disorder Society’s Junior Award for excellence in clinical research. The research is very much a team effort and in accepting this prestigious award I do so on behalf of the whole team working on this project. Particular mention in this regard must go to Dr Mario Miranda who was also supported by The PSP Association until January of this year, and has done a large part of the work for this project. It is a great honor to be invited to Chicago to present my research to the world’s leading experts in movement disorders. “
Professor Andrew Lees, Director of the Sara Koe PSP Research Centre said, “This is the most prestigious award in the world for young clinical researchers in the field of Movement Disorders. Dr Massey was competing against stiff competition from North America and the rest of Europe and it is particularly gratifying that research into the orphan disease PSP should be recognised by the International Movement Disorders Society.”
Dr Angela Wilson, The PSP Association’s Director of Research said, “We are absolutely delighted that Dr Luke Massey has been awarded the International Movement Disorder Society’s 2008 Junior Award for excellence in clinical research. The PSP Association is a small charity with very limited funds for research so to have one of our Research Fellows compete and win on an international basis is truly fantastic.”
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The PSP Association is launching an exiting new initiative ‘Afternoon Tea for PSP’ to mark ‘PSP Awareness Week’ which runs from 5th – 12th April.
Our vision is to have people around the UK and Europe organising their own Tea Party and drinking Tea for Treatment and Coffee for Care to increase awareness about PSP and raise money to support The PSP Association’s much needed work.
‘PSP Awareness Week’ incorporates the 8th April, which is the traditional date of The PSP Association’s annual Magnolia Day. We hope that on this day, or on another afternoon during PSP Awareness Week, people will organise their own ‘Afternoon Tea for PSP’. The idea is simple – we want people to get together with a few friends, family or colleagues and hold a Tea Party. Guests can make a donation for every cup they drink.
Money raised from every Tea Party will be used to provide essential care and support for the thousands of people across the UK and Europe with PSP; to fund our PSP specialist nurses who provide free help and advice to people with PSP and their carers 24 hours a day, 365 days a year; and to fund vital research to develop much needed treatments to slow or halt the progression of PSP and hopefully, eventually, find a cure.
Help us achieve our target of over 10,000 Tea Parties by holding a small, medium or large tea party with your family and friends during PSP Awareness Week.
To obtain your full Tea Party Information Pack packed with information and ideas for holding your own Tea Party and tips on how you can spread the word about PSP please email marilyn.osborne@pspeur.org or telephone +44 (0)1327 322410 or visit www.pspeur.org
Progressive Supranuclear Palsy (PSP) is one of many under-recognised neurodegenerative diseases involving the progressive death of neurons in the brain (mainly in the basal ganglia and brainstem) just above the nuclei. This is the area which controls balance, movement, vision, speech, and the ability to swallow - hence the main progressive symptoms.
Today the cause of PSP is still not fully understood. There is a degree of genetic susceptibility but the disease itself is triggered by environmental factors.
Average life expectancy is some two to four years after diagnosis. In the later stages of the disease patients are confined to a wheelchair or are bed-bound, unable to communicate with the world around them, yet remain mentally alert.
PSP is thought to affect more than10,000 people in the UK at any one time but the true figure is likely to be much higher, as it is often misdiagnosed as a stroke, dementia or Parkinson’s disease and frequently goes undiagnosed in the elderly. Although clinically, biologically and pathologically different, PSP is still often tucked away in the shadow of Parkinson's Disease and is still sometimes referred to as ‘parkinsonism’.
As a tauopathy, it is biologically much more closely related to Alzheimer's disease (but as it occurs in a different part of the brain, there is normally no genuine dementia in PSP). It tends to be a very individual disease.
Every day in the UK around 4 people die from PSP and the prevalence of the disease is set to rise with the changing demographics and an ageing population.
The PSP Association was registered as a charity in 1994 by Sara and Michael Koe, because they were so appalled by the apparent lack of knowledge and even interest within the relevant health and welfare sectors across the UK. The mission of this new Association was the conquest of PSP and its objectives were to:
Over the last 14 years, The PSP Association has grown very rapidly. It has supported over 2,000 families in the UK with members suffering from this disease and a growing number of people across Europe. It provides a Telephone Counselling Service, information for carers and health professional’s and organises Local Support Groups for patients, their carers and professionals mainly across the UK.
We have invested to date nearly £2M on cutting edge research into the cause, effective treatment and cure of PSP and seen considerable progress.
However, although research has led to much greater understanding of the mechanisms of this disease and into hypothesised disease modifying options, progress remains frustratingly slow with seemingly endless roadblocks to be negotiated on the path to achieving our goals of effective treatment and a cure for PSP.
Founded in 1989 (Charity Number Belgium 924092), euro-ATAXIA is a non-profit, non-governmental, European organisation representing people in Europe with ataxia. Its objectives are to:
President:Helen Rikken, Hemsterhuisstraat 66, Amsterdam
Vice-President: Dr.Carlo Casali, Sapienza university, Rome,
Secretary-General: Sue Millman, UK
Treasurer: Marco Meinders, Antilopespoor 482, Maarssen, Netherlands
France. Germany, Holland, Ireland, Spain, Sweden, Switzerland and the United Kingdom
(Previous members Italy, Finland)
For more information on any of the above contact:
Sue Millman, Secretary euro-ATAXIA
Email: newsletter@euro-ataxia.eu
Tel:+20 7587 3922
Fax:+20 7582 9444
Ataxia is not well known by the medical profession so under diagnosis and mis-diagnosis may well be a problem. There are over 50 types of ataxia. The most common ataxia worldwide is Friedreich’s ataxia (FA) which has a frequency of 1 in 40,000. This would imply that there are 11,250 FA patients in Europe in varying stages of the illness. There are other recessive ataxias which are very rare. As can be seen, these figures take no account of the incidence of ataxia in developed countries outside Europe and developing countries.
The incidence of dominant ataxias –SCA- is unknown. There is a wide variation in the frequency e.g. SCA2 is more prevalent in Cuba, SCA3 is more common in Azores island, Netherlands and South America, SCA6 is the most common ataxia in the Newcastle area of Northern England.
There is no proven treatment for Ataxia but there are drugs which can help alleviate some of the symptoms of ataxia but euro-ATAXIA aims to follow all clinical trials in ataxia.
Ataxia is a very slowly progressing condition and this makes the measuring the progress of ataxia difficult. It is not as easy as taking a defined measurement such as blood pressure. Prior to starting any clinical trial, clearly defined end points and clinical markers must be agreed. There has been much discussion about the measuring scales for ataxia ICARS, SARA and FARS.
The process of developing a drug for clinical use is a long and expensive one. There are a host of pre-clinical steps, including toxicity testing in animals, before clinical trials can take place. The following stepwise approach has to be followed:
Phase 1 – Determine drug tolerability and safety using 10’s of patients
Phase 2 – Pilot study to evaluate a disease- relevant biological activity using 10’s of patients
Phase 3 – Large scale study to establish drug efficacy using 100s to 1000s of patients.
Since 2001 the EU have funded a programme called EUROSCA. Its aim was to translate basic research into clinical applications. 22 Europeans groups from 9 countries with an excellent reputation in clinical, clinical-genetic and basic research on SCA jointly form an integrated Project to develop a treatment. To date (June 2007) there are now 28 different types of SCA. Seven new genes have been identified since 2001.
The recessive ataxia programme did not receive funding from the EU in the last framework. Much work has been done in this area at university departments and with the help of money from patient organisations goFAR (Italy) FARA, NAF & MDA (USA).
Patients with ataxia should register on the registries which are available to them www.curefa.org. For other ataxias register on: www.cooperative-ataxia-group.org. This can be done without the assistance of a physician.
Plans are in the progress under the guidance of Prof Schulz for a recessive FA and SCA Registry which will be completed under the guidance of neurologists. Prof Schulz needs funding to initiate this project. A detailed list of other projects that need funding are available from euro-ATAXIA secretary, Sue Millman.
euro- ATAXIA is affiliated to European Disability Forum, European Federation Neurological Association (EFNA) and European Rare Disease patient organisation (EURORDIS) and is in regular contact with these organisations.
Did you know that common health problems can be associated with your sex life? Diabetes, depression and hypertension are just some of these. All recent data prove that a healthy sex life can indicate general well-being. And do we want to find out more? Do we consider it as one of our problems? The European Sexual Dysfunction Alliance (ESDA) wants to remind everyone of the importance of sexual health as a part of overall health and show what as an alliance we have just found out!
ESDA is an umbrella organisation for patient support help-lines across Europe. These organizations exist to provide sufferers and their partners with information and support on issues of sexual health through telephone help-lines, by email and post. They have national websites and fact sheets on different sexual problems in different languages and these can be sent to callers who request them free of charge.
ESDA has been holding an awareness campaign around St Valentine's Day since 2003 with the aim of drawing attention to the sexual health problems of many men and women in Europe. The event is supported by The European Society for Sexual Medicine (ESSM) and concludes on or around the 14th February in all participating countries simultaneously.
This year all countries participating at this alliance through their national centres, we want to stress the importance of consulting sexual problems with the health care provider as in many cases these difficulties can be the first sign of a serious underlying health condition which has gone undetected and undiagnosed.
Recent data from just some of the ESDA help lines shows just how common these problems really are. ESDA help lines in France, Greece, UK, Spain and Sweden received a total of 11.000 calls during last year. The largest number of calls was received in countries with the higher numbers of population of course. In France only, over 4500 people were seeking help as well as in UK with over 3000 phone calls.
Men can hide. Perhaps that is the reason that throughout the continent, men were asking help from the national help-lines, no matter if they are living in Mediterranean or in the north of Europe. In France male callers represented 92, 6, in Sweden 71%, in Spain 93%, in Greece 88.5% and in the UK 75% of all calls were from men.
The ages of the callers ranged from 16 to 87 years with an average age of 48 in the UK, 50 in France, 43 in Greece and 46 in Spain. The majority of callers were in stable relationships: 45% in Greece, 82% in France and 87% in Spain.
Unfortunately, very few! Most interestingly the majority of callers to all national centers, both male and female had never consulted a health professional about their sexual problem: 75% of male callers in Sweden, 70% in Greece, 64% in France and 55% in Spain. In the case of women, still not a lot were trying to find a specialist to consult regarding sexual issues: 55% in Sweden, 60 in Greece, 64% in Spain, and 71% in France had never consulted their problem. This is particularly surprising when you look at the amount of time they had had the problem. In France men had suffered a sexual dysfunction for 3 years on average before calling the helpline and women just over 3 years, whereas in Greece and Spain men had waited over 4 years and women in Spain almost 5 years before calling for help.
Regarding the type of sexual problem consulted ESDA data shows that in all countries men called primarily for erectile dysfunction (ED), 75% in France, 72% in Greece, 65% in Spain, 55% in Sweden and 58% in the UK. But in the era of the drugs trying to help people with ED, still there is the problem with premature ejaculation: the second most consulted problem by men calling the help lines, with 19% in Greece, 25% UK, 12% in Spain and 10% in Sweden. What about women? Of all calls received in Greece, 11.5% were from women. In their case the most common problem was decreased sexual interest and desire: 30% in Sweden, 45% in Greece, 37% in France and 50% in the UK. And as expected their second most common reported dysfunction was orgasmic dysfunction, 36% in Greece, about 11% in Sweden and France and 8% in Spain.
Some of the most interesting data emerges when one looks at concomitant diseases: In Greece approximately 20% of men had cardiovascular disease, followed by 11% diabetes and 3% prostate. In Spain nearly 31% of men had cardiovascular disease followed by 16% prostate problems and 15% diabetes mellitus. In the UK however 12% of male callers claimed they suffered from depression/anxiety and 10% had diabetes. Data from Sweden show that 6% of the men who called the helpline had cardiovascular disease, 6% had a concomitant psychiatric disease and 4% diabetes. In France 20% had cardiovascular problems, 12% had diabetes and as for prostate problems, 7.4%.
There were some important differences seen in different European countries. When presenting national data it was found that in Spain and Greece psychiatric/psychological problems were reported by 14% and 11% of women callers respectively. In Sweden the most common associated problems were gastrointestinal 8%, 6% osteoporosis and 4% cardiovascular disease. The most common medical problem reported by women in France was cardiovascular (17%) followed by psychiatric/psychological problems (25%), 13% lifestyle and 10% diabetes.
ESDA provides sufferers, their partners and the general public with information about their problem and guides them on their way to finding a solution. We also offer support and reassurance. Men and women can call the helpline anonymously in their country and a telephone advisor will discuss the problem with them in a natural and relaxed manner and encourage them to consult their doctor. They can be sure they are not alone: prevalence studies show that, sexual health problems are very common, are often ignored leading to a negative impact on a person's quality of life, their personal relationships and their self-esteem. Additionally it is vital for the public to know that they are often the first sign of an important undiagnosed heath problem such as diabetes, hypertension, depression and others.
A visit to the doctor to discuss the problem is crucial as the first step to getting the right assessment, tests, treatment and follow up. We would also like to stress that any medication purchased on the Internet without a proper guarantee and taken without medical supervision can be dangerous and should be avoided in the interests of safety.
ESDA encourages joint activities of its affiliated members aimed at raising awareness of sexual problems, their diagnosis and the treatments available. These activities include:
ESDA uses a number of communication tools to raise awareness and educate patients, partners, health professionals and the media on ED. These include:
…and call us.
Things are always easier over the phone.
Ask one of our trained advisors about erection problems or any other sexual issues that concern you. Whether you 're male or female advice is only a phone call away.
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Poster and message for ESAE 2004When many of us think about February, that cold, short and otherwise uninteresting month, we remember St Valentine's Day and a nice warm feeling melts the winter chill. It is that time of the year when in many countries romance and passion invade our daily lives. It is a celebration of love and the couple in its universal sense. However it is also a time when people who are experiencing sexual problems in silence are vividly reminded of what they are missing. Not just because their sex lives are impaired but because often this has an adverse affect on their entire relationship as a couple and on their quality of life. This is made even worse by the resulting breakdown in communication with their partner.
It is for this reason that European Sexual Dysfunction Alliance (ESDA) decided four years ago to hold an event on the 14th February in different European countries simultaneously to draw attention to the problems of sexual health, such as erectile dysfunction, lack of desire etc, that affect so many men and women. Many suffer in silence feeling guilty and isolated unable to talk to anyone. Unfortunately by doing this they deny themselves the opportunity of finding a solution. At ESDA we want to celebrate St Valentine's Day with them and remind them through different media activities that help is at hand. Confidential sexual dysfunction helplines exist throughout Europe where trained advisors can inform and support callers and start them on the path to finding a solution. There are many treatment options available and it is fundamental for people who are experiencing difficulties with their erections or other sexual problems to call these centres where they will be fully informed of how and where to go to get the problem solved. On a day like St Valentine's Day we mustn't forget to stress how vital it is for the couple to talk to each other, to share their joys and their problems as these can bring them closer together if they support each other, a problem shared is a problem halved, as the saying goes. Love and sex go together for most couples and on St Valentine's Day we at ESDA want to remind all those people who are experiencing problems that they can recapture the closeness in their sexual relationships by seeking help. It is time to talk themselves back to a healthy sex life.
In 2003 the first ESAE campaign was held with the support of the European Society for Sexual Medicine (ESSM). Thirteen countries participated and a further 7 supported this campaign. Each country devised its own specific activities for the Awareness Event and sought funding on a national level as well as the support of local medical societies whose logos appeared on the visual materials (posters and fliers).
The slogan of the campaign was “There is something between your body and your emotions: your sexual health. Ask if in trouble”. This slogan was meant to raise awareness among the population of the importance of acknowledging the problem and then telephoning a helpline to find a solution. The slogan was printed on fliers and posters in the different languages of the participating countries and these printed materials were distributed to a wide ranging variety of places such as Police Stations, Fire Stations, prisons, companies, hospitals, chemist’s, GPs and media. Events were held across Europe and included press conferences, special film festivals, fashion shows with talk about sexuality, art exhibitions, a mobile advice unit in the street etc. The success of this first event was so encouraging that ESDA decided to repeat the event the following year.
In 2004, 14 European Countries enrolled in the ESAE Campaign. This time more than five hundred thousand flyers and thirty thousand posters, with the campaign slogan “Pick it up” were translated into the different languages and were distributed in hospitals, pharmacies, clinics, shopping centres, cinemas and theatres throughout the 14 Countries involved in the campaign.
In 2005 the message focussed on the general idea of "Get help, get treatment" with a clear slogan "Get treatment" on the visual materials. This represented a logical progression from the campaigns of the previous years:
In 2006 the campaign slogan was “Love keeps you healthy” stressing that love and an active sex life improve people’s the quality of life and to highlight the importance of communication within the couple as one of the most important factors in finding solutions to problems of sexual dysfunction.
Finally in 2007 the campaign revolved round an internet application which allowed people who visited the campaign website to send St Valentine’s messages to their loved one with an invitation to talk about problems regarding their sexual concerns. The message was “Let every day be Valentine's Day”, once again stressing the importance of communication when problems arise in the couple and to keep the romance alive all year round.
The positive outcome of the past years has been very encouraging and ESDA is looking forward to organising more of these events in future in order to further the understanding and awareness of the distress and damage that sexual dysfunction can cause to sufferers lives and their relationships.
As a result of meeting Mary Baker, President of the European Federation of Neurological Associations (EFNA) at the “Strike up a Conversation” Round Table, ESDA was invited to join EFNA and also to participate in the European Federation of Neurological Societies Congress held in Paris in September 2004.
EFNA offered ESDA a free stand in the area reserved for not-for-profit organizations with the objective of providing information and promoting the understanding of sexual dysfunction in patients with neurological conditions. EFNA believes this is an area that is still in its infancy within the field and should receive more attention.
ESDA has continued to cooperate with EFNA and hopes to participate in the Awareness Day at the EFNS congress in Madrid in 2008. We believe that the on-going collaboration with EFNA will develop further and be highly beneficial in making information available for patients suffering from sexual dysfunction associated to neurological conditions.
SAFE represents a range of patient organisations across Europe whose mutual goal is to drive stroke prevention up the European political agenda and prevent the incidence of stroke through education.
By combining the resources of patient organisations across Europe, SAFE is working to champion stroke prevention, save lives and suffering, and save the European economy millions of euros in health care costs.
SAFE was launched in October 2004, and was born out of a strategic workshop held in the European Parliament in June 2003 which led to a declaration calling upon the European Union and its Member States to tackle stroke as a preventable catastrophe.
SAFE will also encourage the creation of national stroke patient groups in Europe where none yet exists.
What we do
SAFE has now 20 member organisations from 17 European countries. At the General Assembly in October 2007 three new organisations joined; one from France, one from Norway and one from UK.
Brain tumour advocates throughout the world have achieved their target of walking the equivalent of three times the distance around the Earth at the Equator.
The target was 120,000 kms and 28,618 walkers in over 100 separate walks in 15 different countries in North and South America, Europe and Asia, have so far reached a combined total of 123,024 kms with more results still to arrive.
The Walk Around the World for Brain Tumours is now an annual event. In 2007 the target was once around the Equator but the walkers that year covered nearly two and a half times the distance.
The World Walk is intended to raise awareness about the challenges of a brain tumour diagnosis and the need for more research and support. Approximately 200,000 people worldwide will develop a malignant primary brain tumour in the next twelve months. Well known people to be diagnosed with a brain tumour in 2008 included Senator Ted Kennedy (USA) and the golfer Seve Ballesteros (Spain).
The walk events raised at least $4.7m for local brain tumour research and support organisations. (No funds are sought or accepted by the IBTA from these events).
The World Walk concludes at the end of the International Brain Tumour Awareness Week, which was held during 26 October to 1 November. During the Awareness Week picnics, seminars and concerts were held, including a tour of Britain, Denmark and Sweden by US brain tumour survivor, singer and songwriter David M Bailey.
Scientists, clinicians, and brain tumour groups organised education meetings in India, Slovakia, Italy, Lithuania, Australia, the UK, Belgium and other locations.
The Chair of the International Brain Tumour Alliance Mr Denis Strangman, Australia, hailed the two main international projects as a success and said they would be repeated in 2009 with the Awareness Week most likely being held during 1-7 November when the focus would be on the 125 th anniversary of the first documented modern day brain tumour surgery by Sir Rickman Godlee which took place in London (UK). Sir Rickman later travelled to the USA where he met with US surgeons to talk about his pioneering operation.
Examples of events and walks held can be found on the IBTA website at: www.theibta.org
Each year in Europe, nearly 50,000 people are diagnosed with a lethal, primary malignant brain tumour. A slightly smaller number are diagnosed with a non-malignant brain tumour which can be equally devastating. Many tens of thousands more develop metastatic brain tumours.
Around the globe, brain tumour patients, families, caregivers, medical and allied healthcare professionals took part in numerous activities to mark the International Brain Tumour Awareness Week held during October, which was organised by the International Brain Tumour Alliance (IBTA).
People participated from ten European countries: Austria, Belgium, Croatia, Finland, France, Italy, Netherlands, Spain, Sweden and the United Kingdom. It is hoped that next year, even more European countries will become involved in the International Brain Tumour Awareness Week, scheduled for Sunday, 26 October to Saturday, 1 November 2008.
A wide range of European activities took place in the period up to and including the Awareness Week. These included brain tumour patient conferences, open days at scientific institutions, concerts, sponsored walks, special interest talks, press conferences, scientific meetings and sponsored walks.
Walks were mainly undertaken in connection with the Walk Around the World for Brain Tumours. People organised sponsored walks and raised funds for local brain tumour support groups or research institutions in their own countries, and then donated the mileage achieved to the World Walk target of 40,000 kms which is once around the world at the Equator.
Dozens of support groups and research institutions throughout Europe benefited from funds raised during this week.
22,660 walkers around the world amassed a staggering 115,000 kms in total – nearly three times around the world and far exceeding the original plans to encircle the globe just once (40,000 kms). For more information on completed activities see http://www.theibta.org/index.php?page=recent-events and http://www.theibta.org/index.php?page=more-completed-activities.
Following the 2007 Awareness Week and World Walk the IBTA surveyed its contacts about their experiences and what should be done during 2008. 97% of those surveyed supported a repetition of the World Walk and 95% supported a repetition of the Awareness Week.
In addition to those activities the IBTA will also seek European Commission support for a survey by the World Health Organisation (WHO) of the standard of care for brain tumour patients in a representative sampling of developing countries, and their access to palliative medications.
Those interested in supporting these activities should contact the IBTA Chair (Denis Strangman) at chair@theibta.org
A collaborative research project partly funded by the Motor Neurone Disease (MND) Association and led by Professor Chris Shaw at the Institute of Psychiatry, King’s College London, has yielded a significant advance in MND research.
Researchers have found that mutations in a gene coding for the ‘TDP-43’ protein causes MND in one family affected by the rare, inherited form of the disease. This result follows recent research linking the accumulation of TDP-43 protein in nerve cells of people with MND but not in unaffected individuals.
Professor Shaw says: “We are very excited by this discovery. The new gene mutations tell us that the TDP-43 protein, which accumulates abnormally in MND, can be directly toxic to motor neurons, instead of being an innocent by-product of the disease process, as was previously thought. It also means we develop new and better disease models, which will bring us closer to developing more effective therapies.”
Brian Dickie, Director of Research Development at the MND Association, says: “The discovery of a new cause of the disease is of international importance, allowing researchers around the world to rapidly generate more pieces of the complex puzzle that is MND. This new information will be a spring board to greater understanding of the processes that cause motor nerves to die - and it is through such understanding that we will develop the treatment strategies to defeat this devastating disease.”
Rare mutations identified in inherited forms of Alzheimer's and Parkinson’s disease dramatically advanced research into these fields. The MND Association and MND researchers believe that mutations in TDP-43 may make a similar contribution to the study of amyotrophic lateral sclerosis (ALS), which is a form of MND.
If you are affected by MND and would like to know more about this research paper, read our News in Research article.
Louise Coxon Communications Manager
01604 611843 / 07831 349408
louise.coxon@mndassociation.org
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