Rare disease Associations
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 32 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)
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 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
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What is the study of rare diseases?
Rare disease is the disease that only affects small percentage of population. Example of this is rare forms of spleen cancer. Pharmaceutical company get tax deduction for doing research for such disease.