The Council of National Alliances (CNA)

The CNA was established by Eurordis. This structure allows national representatives of rare diseases 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

What is a national alliance?

National 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,
• 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:

1. Represent the highest number possible of rare disease patients
2. Speak with a unique and stronger voice
3. Federate patient organisations on a national level
4. Increase influence on national policy and decision makers and regulatory authorities
5. Share experience, information and best practices
6. Spread knowledge and increase awareness on rare diseases
7. Represent a country’s rare disease patients at the European level
8. Be an active member of a European network through the Council of National Alliances