National Alliances for Rare Diseases

What is a national alliance?

hands joining togetherNational 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)

Council of National Alliances
 
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

 

CNA Workshop 8 November 2011, Paris

 

 

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
Hrvatska Udruga Bolesnika S Rijetkim Bolestima
(The Croatian Society Of Patients With Rare Diseases)
www.rijetke-bolesti.hr

Cyprus
Cyprus Alliance for Rare Disorders (CARD)

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

Denmark
Rare Disorders Denmark
Sjældne Diagnoser
www.raredisorders.dk

Finland
HARSO-Rare Disease Alliance Finland

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

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
Hungarian Federation of People with Rare and Congenital Diseases- Rare Diseases Hungary
HUFERDIS
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

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

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

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)
www.apwromania.ro

Russian Federation
National Association of Rare Diseases Patients (GENETICS)
www.rarediseases.ru
Russian Patients Union - RD Working group
rare-diseases.ru
 
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
Sällsynta diagnoser - Rare Diseases Sweden
formerly known as The Swedish Association of Rare Disorders
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
 

 


National Rare Disease Alliances Outside of Europe

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: 18/02/2013