National Alliances for Rare Diseases
What is a national alliance?

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:
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They are able to advocate for all rare disease patients at national level and constitute a powerful stakeholder that governments must take into account.
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They are better listened to because they represent a group of patient associations.
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They can take part in the policy development or decision-making process.
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They gain political influence and social recognition for rare disease patients and families.
8 good reasons to create a national rare disease alliance
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Represent the highest number possible of rare disease patients
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Speak with a unique and stronger voice
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Federate patient organisations on a national level
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Increase influence on national policy and decision makers and regulatory authorities
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Share experience, information and best practices
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Spread knowledge and increase awareness on rare diseases
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Represent a country’s rare disease patients at the European level
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Be an active member of a European network through the Council of National Alliances
The Council of National Alliances (CNA)

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:
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Share information and experience
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Compare good practices and build on them
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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 anja.helm@eurordis.org for more information
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CNA workshop, 21 April 2022, online
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CNA workshop, 8-9 November 2021, online
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CNA workshop, 29 April 2021, online
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CNA workshop, 25-27 November 2020, online
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CNA workshop, 19 March 2020, Paris
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CNA Workshop 6 November 2019, Brussels
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CNA Workshop 16 May 2019, Bucharest
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CNA Workshop 10-11 December 2018, Paris
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CNA Workshop 15 March 2018, Brussels
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CNA Workshop 26-27, October 2017, Paris
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CNA Workshop 18 May 2017, Budapest
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CNA Workshop 2-3 November 2016, Paris
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CNA Workshop 25 May 2016, Edinburgh
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CNA Workshop, 27- 28 October 2015, Paris
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CNA Workshop, 28 May 2015, Madrid
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CNA Workshop, 13- 14 October 2014, Paris
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CNA Workshop, 28- 29 October 2013, Paris
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CNA Workshop, 30 May 2013, Dubrovnik
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CNA Workshop 29-30 October 2012, Paris
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CNA Workshop 8 November 2011, Paris
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CNA Workshop 12 May 2011, Amsterdam
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Monthly calls: presentation and documents
For CNA Members only, these documents are password protected. Please contact anja.helm@eurordis.org for more information
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List of National Alliances in Europe
Albania
Rare Diseases Association
Belgium
Rare Disease Organisation Belgium (RaDiOrg Belgium)
www.radiorg.be
Bosnia and Herzegovina
Alliance for rare diseases of Republic of Srpska, Bosnia and Herzegovina
Bulgaria
National Alliance of People with Rare Diseases (NAPRD)
rare-bg.com
Georgia
Georgian Foundation for Genetic and Rare Diseases
Germany
Allianz Chronischer Seltener Erkrankungen (ACHSE)
German National Alliance for Chronic Rare Diseases
www.achse-online.de
Italy
Federazione Italiana Malattie Rare (UNIAMO)
Italian Federation for Rare Diseases
www.uniamo.org
Kosovo
Rare Diseases Kosovo
Lithuania
Association For Children Rare Diseases
Luxembourg
ALAN - Maladies Rares Luxembourg
www.alan.lu
Malta
National Alliance For Rare Diseases Support - Malta
Montenegro
National Organisation for Rare Diseases
Netherlands
VSOP - Vereniging Samenwerkende Ouder En Patiëntenorganisaties
www.vsop.nl
Norway
Norwegian Federation of Organsiations of Disabled People (Funksjonshemmedes Fellesorganisasjon) (FFO)
Portugal
RD-Portugal - União de Associações das Doenças Raras de Portugal
raras.pt
Russian Federation
Russian Association of Rare Diseases
Russian Federation
Russian Patient Union
United Kingdom of Great Britain and Northern Ireland
National Rare Disease Alliances Outside of Europe
Argentina
Federación Argentina de Enfermedades Poco Frecuentes
Brazil
Associacao Brasileira de Enfermedades Raras
Brazil
Instituto Vidas Raras
India
Organization For Rare Diseases India
India
Indian Organization for Rare Diseases
Iran (Islamic Republic of)
Rare Disease Foundation of Iran
New Zealand
New Zealand Organisation for Rare Disorders (NZORD)
www.nzord.org.nz
South Africa
Rare Diseases South Africa
Taiwan, Province of China
Taiwan Foundation for Rare Disorders (TFRD)
www.tfrd.org.tw
Page created: 11/02/2010
Page last updated: 02/05/2022