National Alliances for Rare Diseases
What is a national alliance?
National rare disease alliances serve to bring together all the many rare disease organisations in a particular country.
National alliances include large and small patient organisations as well as professional organisations, and liaise with government bodies, scientific and medical organisations on the subject of rare diseases. They represent many types of rare diseases.
National alliances exist in many, but not all, European countries. The characteristics and activities of each alliance vary from country to country.
What can national alliances do?
National rare disease alliances are stronger than national single disease patient groups (when addressing common issues) because they represent a high number of patients and can speak with one voice.
As a consequence:
They are able to advocate for all rare disease patients at national level and constitute a powerful stakeholder that governments must take into account.
They are better listened to because they represent a group of patient associations.
They can take part of the policy development or decision-making process.
They gain political influence and social recognition for rare disease patients and families.
8 good reasons to create a national rare disease alliance
Represent the highest number possible of rare disease patients
Speak with a unique and stronger voice
Federate patient organisations on a national level
Increase influence on national policy and decision makers and regulatory authorities
Share experience, information and best practices
Spread knowledge and increase awareness on rare diseases
Represent a country’s rare disease patients at the European level
Be an active member of a European network through the Council of National Alliances
The Council of National Alliances (CNA)
The CNA is a group established by EURORDIS, which allows national representatives to work together on common European actions.
It is a primary source of information and provides a platform for communication and support between Eurordis and the alliances for rare disease policies at European level.
Through collaborating on a European level and networking through EURORDIS, national rare disease alliances are able to:
Share information and experience
Compare good practices and build on them
Achieve great outcomes through common actions
Current collaborations focus on:
The Rare Disease Day (last day of February every year)
National Plans for Rare Diseases in the framework of EUROPLAN
Past and future Workshops
List of National Alliances in Europe
Pro Rare Austria
Rare Disease Organisation Belgium (RaDiOrg Belgium)
National Alliance of People with Rare Diseases (NAPRD)
Hrvatska Udruga Bolesnika S Rijetkim Bolestima
(The Croatian Society Of Patients With Rare Diseases)
Cyprus Alliance for Rare Disorders (CARD)
Czech National Association for Rare Diseases
Rare Disorders Denmark
HARSO-Rare Disease Alliance Finland
Alliance Maladies Rares
French Rare Diseases Alliance
Allianz Chronischer Seltener Erkrankungen (ACHSE)
German National Alliance for Chronic Rare Diseases
Greek Alliance for Rare Disease (PESPA)
Hungarian Federation of People with Rare and Congenital Diseases- Rare Diseases Hungary
Genetic and Rare Disorders Organisation (GRDO)
Federazione Italiana Malattie Rare (UNIAMO)
Italian Federation for Rare Diseases
Association Luxembourgeoise d’aide pour les personnes Atteintes de maladies Neuro-Musculaires et de maladies rares (ALAN asbl)
Luxembourg Association for Neuromuscular and Rare Diseases
VSOP - Umbrella organisation of parent and patient organisations for genetic, congenital and rare disorders
Aliança Portuguesa de Associações das Doenças Raras
Federação Portuguesa de Doenças Raras (FEDRA)
Romanian National Alliance for Rare Diseases (RONARD)
National Association of Rare Diseases Patients (GENETICS)
Russian Patients Union - RD Working group
Slovak Alliance of Rare Diseases
Federación Española de Enfermedades Raras (FEDER)
Spanish Rare Disease Federation
Sällsynta diagnoser - Rare Diseases Sweden
formerly known as The Swedish Association of Rare Disorders
Genetic Alliance UK
Rare Diseases UK
National Rare Disease Alliances Outside of Europe