Here you can get to know the team at EFNA. Click on each name to learn more about our Board Members, or scroll down to meet our team of consultant staff.
President - Joke Jaarsma
In her working life Joke Jaarsma was senior publisher at one of the major science publishers. She joined the Dutch Restless Legs Syndrome (RLS) patient association in 1999. The disease runs in her family and she wanted to learn more about it through patient advocacy work. To date she is still active as Vice President of the Dutch Group.
In 2009 she started the European Alliance for Restless Legs Syndrome, an organization which now represents all major European patient groups for RLS. She still works with them as Director External Relations. In 2017 Joke was elected as treasurer of the European Brain Council. She also is a member of several scientific panels at the European Academy of Neurology.
Joke Joined the EFNA Board in 2012 and has been actively involved in EFNA’s work since then. Having finished full-time paid employment she decided to spend her retirement in helping give neurology patients a strong and collective voice.
Vice President - Monika Benson
Since 2001, Monika has been affected by a neurological disorder, cervical dystonia. Some time after the diagnosis she became involved in her local dystonia support group and in 2006 she joined the Board of the Swedish Dystonia Association. In 2007, she was elected President of Dystonia Europe. After the maximum term of six years came to an end in 2013, Monika began working as Dystonia Europe’s Executive Director for Dystonia Europe – a position she still holds today.
Before she got involved in dystonia, Monika worked as a Course Coordinator for a school in Lund. Her responsibilities included the organisation of various activities such as lectures, workshops and courses. She speaks English and French and understands Danish and Norwegian.
Monika has four adult daughters, and loves spending time her family and friends. In her free time she enjoys going for hikes in the forest or by the sea. She also likes to swim, dance, bake and read.
Secretary General - Astri Arnesen
When Astri was born in Norway in 1962, her mother had not yet developed symptoms of Huntington’s Disease (HD), but she did become sick a few short years later. Her disease progressed throughout Astri’s childhood and adolescence until she finally passed away in 2004.
Astri has been engaged as a patient representative and advocate since the mid-1980s. From 2004-2014 she was the President of the Norwegian Huntington Association and from 2010 joined the board of the European Huntington Association (EHA), to which she was elected President in 2016.
Astri now works full time for EHA, but in her previous career was head of department for a unit providing expertise in special educational needs to stakeholders in the educational sector from kindergarten to university level.
Astri is educated as a teacher in learning disabilities and has additional university degrees in developmental psychology, management and innovative processes.
Through her longterm engagement in the HD field Astri has gained a wide network within the HD community all over Europe and globally. Astri is also active in the rare disease field through her engagement with Eurordis and the European Reference Networks (ERN). Astri is also part of the steering committee for so-called ePAG’s (patient reps in the ERN’s).
Treasurer - Klaus Knops
Klaus joined the Multiple Sclerosis (MS) community as a volunteer when his spouse was diagnosed with MS in 1988. Since 2015 Klaus has been a member of the European Multiple Sclerosis Platform (EMSP) Executive Committee.
After the diagnosis of his wife, Klaus decided to fight against the disease first as caregiver, then as a volunteer for the Flemish MS Society.
After getting involved with the Flemish MS Society, Klaus was elected as President of the organisation. After his retirement, he remained an active member of the board in both the Flemish and the National Belgian MS Societies.
Member at Large - Anne Goodchild
Anne Goodchild is French but lives in Brussels with her husband and two daughters.
Anne studied European law in Strasbourg, before working as an Assistant to an MP for 2 years at the French National Parliament. She then worked in Human Resources for an American company for 5 years, before joining the European Commission in Brussels as a European civil servant, working mainly on HR matters.
At the age of 40, Anne was treated for Lyme Disease but found out that she also had Myalgic Encephalomyelitis (ME).
In early 2020, Anne became the French representative of the European ME Alliance (EMEA). She is also a member of EMEA’s EU and WHO Advocacy group.
She enjoys volunteering in a multicultural environment as it reminds her of her previous professional activities.
Member at Large - Ivanka Jovanović
Ivanka Jovanovic is Executive Director of the National Organization of Persons with Disabilities of Serbia (NOOIS) with excellent knowledge of disability policy and human rights advocacy for people with disabilities. She is one of the prominent leaders of the disability movement in Serbia with years of experience at both domestic and international level.
Ivanka has been a disability movement activist since the age of 18 and a youth activist within EAMDA’s (European Alliance of Neuromuscular Disorders Associations) youth group of people with Muscular Dystrophy.
Since 1993, Ivanka has been working full-time with the Muscular Dystrophy Association of Serbia and is still engaged there as an expert associate. She has cooperated with the UN since 2013, particularly with the Committee on the Rights of Persons with Disabilities, in the field of monitoring the UN Convention implementation and working on harmonising Serbian regulations and practices.
Ivanka is currently very active at international level as NOOIS representative at the EDF (European Disability forum) and DPI Europe (Disability People International). She is current Vice-President of EAMDA.
Ivanka is also a member of the Serbian JCC (EU-Serbia Civil Society Joint Consultative Committee) in the field of social-economic development, a member of the Council for Disability Issues of the Government of the Republic of Serbia and of the Ethics Committee of Serbia.
She holds a degree in Journalism from the University of Belgrade, as well as an informal degree in the field of NGO management and human rights, non-discrimination, lobbying and advocacy.
She is the author or co-author of many research papers.
Member at Large - Robin Pinkston
Robin Pinkston joins the EFNA board as representative of the International Bureau for Epilepsy (IBE).
As the mother of a son with epilepsy for the past ten years, Robin has been active in the Caritas Malta Epilepsy Association (CMEA) as an advocate for a “better life for people with epilepsy.” She has witnessed firsthand the need for more awareness and training to reduce stigma and the difficulties associated with enabling access to the latest medications.
Alongside CMEA, Robin managed an EU Creative community for the Inspire Mosaic Project, encouraging participants from multiple NGOs to produce art from recycled tiles. She is a firm believer that we have a stronger voice working together.
She and her husband are Americans, but have lived in Malta since 1998, where her husband is a pastor of an evangelical church. They have two other children who are grown and living in the USA and Germany.
Member at Large - Russell Patten
A British national, Russell has grown up on the European Continent where he has been working for the last 30 years. He started his career in the European Commission, to then joined the private sector, including an international law firm responsible for trade and competition cases and thereafter, he specialised in advocacy and communications working for several international groups.
In 2003, he became CEO of Grayling in Belgium and is the Chairman of Grayling’s European Public Affairs department. Russell specialised in health policy, amongst others, and has worked for many health care groups including patients organisations, healthcare companies and the WHOs Communications Department and specific-diseases Units. Russell has also held several positions including President of the British Chamber of Commerce in Belgium and Secretary General of several trade associations.
In 2019, he became the Director General of the European Parkinson Disease Association (EPDA), having advised them over the last 3 years in helping to develop their long term strategy. He is also a member of the World Parkinson Congress Executive and Leadership teams in the run up to the WPC 2022 Parkinson’s Congress in Barcelona.
Member at Large - Viorica Cursaru
Viorica is a UN retiree, having worked proudly with the organisation for almost 20 years prior to her retirement.
In 2007, when her husband was diagnosed with multiple myeloma, Viorica founded Myeloma Euronet Romania. Since that time she has been working to promote fair access to treatment and medicine for Romanian patients suffering from multiple myeloma at both national and European level,.
In 2010, Viorica was one of the founding members of Pain Alliance Europe (PAE) and acted as a Board Member with the group for 3 consecutive terms.
Viorica is also a member of several international organisations which are actively promoting the rights of cancer patients, such as International Myeloma Foundation. On their behalf Viorica has made presentations at several congresses, such as EHA/ ASH Amsterdam and Berlin.
Viorica strongly believes that all European patients must benefit from fair access to treatment and medicine, social inclusion and most of all respect, as provided for in the European Charter of Human Rights.
Dr. Orla Galvin
Dr. Orla Galvin came to patient advocacy with a PhD in Medicine and background in drug discovery and design in both academic and industry environments. Transitioning to advocacy work at the umbrella patient organisation Retina International, Orla led high impact, multi-stakeholder socio-economic studies, patient preference studies, and accessibility studies across the globe assessing both rare and common conditions.
Orla is an internationally invited speaker to both research and clinical learned societies (for example EURORDIS, EU Retina, ERN-EYE), patient organisations, and industries on topics such as:
- Patient and public involvement in advocacy, research and policy,
- Research in advocacy and policy/evidence-based advocacy,
- Education in advocacy,
- Generation of real-world data,
- Patient reported outcomes, and
- Health economics.
Senior Policy Advisor
Tadeusz Hawrot joined EFNA as Senior Advocacy Coordinator in 2018. Tadeusz has spent more than a decade working in the EU environment, including nine years at the European Brain Council. His relevant academic background includes a post-graduate degree in Public Relations held at the Warsaw School of Economics.
Senior Communications Manager
Elizabeth joined EFNA as Communications Manager in July 2015.
She previously worked on projects for the Migraine Association of Ireland, the European Headache Alliance and the Brain Mind and Pain MEP Interest Group. She has a personal interest in neurology having lived with migraine since childhood.
Elizabeth holds an MA in Digital Media Technologies and an honours degree in Media Production and Management.