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).

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.

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.

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.

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.

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.

Gracemarie is a member of the European ME Alliance (EMEA). She has over 20 years experience working in the field of communications, international relations and public policy, and has experience in advocacy work.

Gracemarie advocates for people with disabilities while also managing her own neurological illness. She is American and Swiss and speaks/understands English, Italian, German and French.

Julian is a member of European Restless Legs Syndrome (EARLS) and also suffers with the condition.

Julian is a GP and after leaving his personal practice in 2020 he continues to work as the medical director and director of clinical governance of a GP federation, Medway Practices Alliance (MPA).

He is also involved in writing clinical guidelines for the National Institute for Health and Care Excellence (NICE), advises a professional organisation in the UK and was the Chairman of Kent Local Medical Committee. He brings many years of advocacy as well as personal and professional experience of dealing with a neurological condition.

Ingolf is the vice president of ECMT, president of the CMT group in the Deutsche Gesellschaft für Muskelkranke (DGM), ret. Professor of European and Public law, Humboldt University of Berlin, after he served at the Legal Service of the European Commission in Brussels for more than 10 years.

He is committed to stimulate enhanced research activities on CMT around Europe and beyond. He is himself affected by CMT, as well as his three children.