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 38 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:

  • The International Rare Disease Day (last day of February every year)
  • The implementation of National Plans & Strategies for Rare Diseases
  • The European Year for Rare Diseases
     

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

 

List of National Alliances in Europe

Austria
Pro Rare Austria
prorare-austria.org

Belgium
Rare Disease Organisation Belgium (RaDiOrg Belgium)
www.radiorg.be

Bulgaria
National Alliance of People with Rare Diseases (NAPRD)
rare-bg.com

Croatia
Croatian Alliance for Rare Diseases
www.rijetke-bolesti.hr

Cyprus
Cyprus Alliance for Rare Disorders (CARD)
http://raredisorderscyprus.com/

Czech Republic
Czech National Association for Rare Diseases
http://vzacna-onemocneni.cz/

Denmark
Rare Diseases Denmark (SJAELDNE DIAGNOSER)
Sjældne Diagnoser
http://www.sjaeldnediagnoser.dk/

Finland
HARSO-Rare Disease Alliance Finland
http://www.harsofinland.net/ 

France
Alliance Maladies Rares
French Rare Diseases Alliance
www.alliance-maladies-rares.org

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

Greece
Greek Alliance for Rare Disease (PESPA)
www.pespa.gr

Hungary
RARE DISEASES HUNGARY - HUNGARIAN FEDERATION OF PEOPLE WITH RARE AND CONGENITAL DISEASES
www.rirosz.hu

Ireland
Genetic and Rare Disorders Organisation (GRDO)
www.grdo.ie

Italy
Federazione Italiana Malattie Rare (UNIAMO)
Italian Federation for Rare Diseases
www.uniamo.org

Latvia
Latvian Alliance for Rare Diseases
ieva.plume@gmail.com

Luxembourg
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
www.alan.lu

Macedonia
National Alliance for Rare Disease of R. Macedonia

Netherlands
VSOP - Umbrella organisation of parent and patient organisations for genetic, congenital and rare disorders
www.vsop.nl

Poland
Polish National Forum on the Treatment of Orphan Diseases - ORPHAN
www.rzadkiechoroby.pl

Portugal
Aliança Portuguesa de Associações das Doenças Raras
aliancadoencasraras.org
Federação Portuguesa de Doenças Raras (FEDRA)
www.fedra.pt

Romania
Romanian National Alliance for Rare Diseases (RONARD)
bolirareromania.ro

Russian Federation
National Association of Patients with Rare Diseases '"GENETICA"
www.nacgenetic.ru
Russian Association of Rare Diseases
rare-diseases.ru

Serbia
National Organization for Rare Diseases
www.norbs.rs

Slovakia
Slovak Alliance of Rare Diseases
http://www.sazch.sk/

Spain
Federación Española de Enfermedades Raras (FEDER)
Spanish Rare Disease Federation
www.enfermedades-raras.org

Sweden
Rare Diseases Sweden (RIKSFÖRBUNDET SÄLLSYNTA DIAGNOSER)
www.sallsyntadiagnoser.se

Switzerland
Proraris
www.proraris.ch

United Kingdom
Genetic Alliance UK
www.geneticalliance.org.uk
Rare Diseases UK
Associate Member
www.raredisease.org.uk
 

Ukraine
Rare Diseases of Ukraine
www.facebook.com/orphandisua
 

 


National Rare Disease Alliances Outside of Europe

Brazil
Associacao Brasileira de Enfermedades Raras
feber-brasil.comunidades.net

Canada
Canadian Organization for Rare Disorders (CORD)
www.raredisorders.ca

Malaysia
Malaysian Rare Disorder Society (MRDS)
www.mrds.org.my

New Zealand
New Zealand Organisation for Rare Disorders (NZORD)
www.nzord.org.nz

United States of America
National Organization for Rare Disorders, Inc. (NORD)
www.rarediseases.org

Taiwan
Taiwan Foundation for Rare Disorders (TFRD)
www.tfrd.org.tw 

 

 

Page created: 11/02/2010
Page last updated: 06/06/2016
 
 
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