CF Europe Meetings Agenda

Each topic will be introduced by CFE and followed by presentations of national associations who have interesting experiences in the field of the presented topic. Focus is on exchange and discussion!
• We invite all of you to prepare a presentation (oral or aided by power point).
• Please present, show, explain, discuss your problems, questions, positive and less positive experiences, possible solutions....

1. Building strong networks within the organization

- Involving patients and families:
• How to find new members and include CF patients and families
• How to build a net among the active members
• How to involve passive members

- Internal organization
• How to delegate tasks and involve everyone interested
• Decision making, defining priorities
• Conflict resolution

2. Building a positive collaboration between CF patients/families and professionals: both experts in their own way

- Relationship and roles of professionals and patients; who does what and takes (final) decisions...
• within the patient organisation
• in lobbying/national policy making
• in education projects (publications, info meetings...)
• validation of information for patients and families

3. Networking with other disease associations

The European Council Recommendation on European Action in the field of Rare Diseases could have a great impact on the national health policy for European countries, especially the recommendation to establish national plans for rare diseases. Goal is to get ideas on how to influence national health policy by being involved in a broader collaboration