Umbrella Organizations

European Federation of Neurological Associations

EFNA is an umbrella group representing pan-European neurology patient groups. Their slogan is ‘Empowering Patient Neurology Groups’. 

EFNA embraces the concept of Partnership for Progress – working at a high level with relevant stakeholders from the fields of policy, medical, scientific/research, industry, patient partners and other key opinion leaders.

Their mission will be advanced based upon the following three strategic areas for action:

  • Awareness and Advocacy for Neurology
  • Coordination of and Collaboration with the Neurology Community
  • Empowering and Integrating the Neurology Patient Voice

The Eurordis - Rare Disease Europe

EURORDIS is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases in Europe and beyond. Their mission is to build a strong pan-European community of patient organisations and people living with rare diseases, to be their voice at the European level.

Their vision is to unite, expand and reinforce the rare disease movement of patient organisations and patient advocates around the world.

EURORDIS represents 962 rare disease patient organisations in 73 countries.

HD Organizations

The International Huntington Association

The IHA is an umbrella organization formed by Huntington’s Disease (HD) associations all over the world, representing more than 250.000 individual members.

Their main aim is to connect people through our unique borderless network.  We work for better care, treatment and research for Huntington´s Disease.  We also collaborate in world-wide clinical trials that are approved by the IHA board.

Some of the members of the IHA include South and North America, China, Australia, India and the Arab Huntington´s associations.

The Huntington’s Disease Youth Organization

The HDYO is non-profit set up to provide support and education to young people (aged up to 35) impacted by Huntington’s disease (HD) around the world.

They do this through providing professional support online, creating needed educational content for all age groups, making our site and content available in as many languages as we can, connecting young people with their peers, making events such as youth camps and conferences around the world, motivating and providing opportunities for young people to get involved and working with other HD organizations to improve what they offer young people also.

Professional Networks

The European Reference Network

The ERN is a virtual network comprised of healthcare professionals spread around Europe. Their objective is to tackle complex or rare diseases and conditions that necessitate highly specialised treatment and a concentration of knowledge and resources. Indeed, often a disease is so rare that expert knowledge is not available in the patient’s country or region and ERNs facilitate the exchange of knowledge between healthcare professionals across borders.

Each ERN has a coordinator who convenes “virtual” advisory boards of medical specialists across different disciplines, using a dedicated IT platform and telemedicine tools to review a patient’s condition for diagnosis and treatment. The patient doesn’t travel but knowledge does.

European Huntington's Disease Network

The EHDN is a nonprofit research network committed to advancing research, facilitating the conduct of clinical trials, and improving clinical care in HD. Through the EHDN a platform has been created such that basic scientists, clinicians, patients and families can collaborate on academic and industry studies to fulfil its mission. 

As a network of stakeholders in HD, the EHDN offers its members the opportunity to take a lead and propose, conduct and publish studies. Anyone who has an interest in HD, including those affected directly by the disease, may join the EHDN and, in so doing, make a personal contribution to HD events and research.