National Alliances for Rare Diseases

What is a national alliance?

hands joining together

National Alliances federate patient organisations from a wide range of diseases within their particular country.

National alliances exist in many, but not all, European countries. The characteristics and activities of each alliance vary from country to country.

Currently, there are 52 National Alliances who are members of EURORDIS, of which 29 form the European Network of National Alliances for Rare Diseases. The latter are all organisations recognised as “National Alliances of Rare Disease Patient Organisations” by the EURORDIS Board of Directors. The European Network of National Alliances for Rare Diseases is governed by the Council of National Alliances.


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 in 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)

Council of National Alliances
The CNA is the governing body of the European Network of National Alliances, which is made up of European National Alliances, recognised as such by the EURORDIS Board of Directors. 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 significant outcomes through common actions

Current collaborations focus on:

In 2013, the CNA and the EURORDIS Board of Directors adopted the “Common Goals & Mutual Commitments between EURORDIS & National Alliances in Europe”. This is an initiative that aims to promote greater convergence and collaboration between National Alliances, and between National Alliances and EURORDIS.

More information about the CNA

Workshops: Presentations and content

For CNA Members only, these documents are password protected. Please contact for more information


List of National Alliances in Europe

Rare Diseases Association
Pro Rare Austria, Allianz für seltenen Erkrankungen
Rare Disease Organisation Belgium (RaDiOrg Belgium)
National Alliance of People with Rare Diseases (NAPRD)
Rare Diseases Croatia
Cyprus Alliance for Rare Disorders (CARD)
Czech Republic
Rare diseases Czech Republic (Česká asociace pro vzácná onemocnění (ČAVO))
Rare Diseases Denmark (Sjaeldne Diagnoser)
HARSO-Rare Disease Alliance Finland
Alliance Maladies Rares
French Rare Diseases Alliance
Allianz Chronischer Seltener Erkrankungen (ACHSE)
German National Alliance for Chronic Rare Diseases
Rare Diseases Hungary -  RIROSZ
Rare Diseases Ireland
Federazione Italiana Malattie Rare (UNIAMO)
Italian Federation for Rare Diseases
Rare Diseases Kosovo
Latvian Alliance for Rare Diseases
Association For Children Rare Diseases
ALAN - Maladies Rares Luxembourg
National Alliance For Rare Diseases Support - Malta
National Organisation for Rare Diseases
VSOP - Vereniging Samenwerkende Ouder En Patiëntenorganisaties
Norwegian Federation of Organsiations of Disabled People (Funksjonshemmedes Fellesorganisasjon) (FFO)
Polish National Forum on the Treatment of Orphan Diseases - ORPHAN
Aliança Portuguesa de Associações das Doenças Raras
Romanian National Alliance for Rare Diseases (RONARD)
National Organization for Rare Diseases
Slovak Alliance of Rare Diseases
FEDER - Federación Española de Enfermedades Raras
Rare Diseases Sweden (Riksförbundet Sällsynta Diagnoser)
North Macedonia
National Alliance for Rare Disease of R. Macedonia
Non-governmental Organization "Rare Diseases of Ukraine"

United Kingdom of Great Britain and Northern Ireland
Genetic Alliance UK
Rare Disease UK is a campaign run by Genetic Alliance UK


National Rare Disease Alliances Outside of Europe

Rare Voices Australia
Canadian Organization for Rare Disorders (CORD)
Chinese Organisation for Rare Disorders
Japan Patient Association
Malaysian Rare Disorder Society (MRDS)
New Zealand
New Zealand Organisation for Rare Disorders (NZORD)
Taiwan, Province of China
Taiwan Foundation for Rare Disorders (TFRD)
United States of America
National Organization for Rare Disorders, Inc. (NORD)


Page created: 11/02/2010
Page last updated: 18/09/2020
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases