| 1.
|
form
strong, dedicated, determined condition bound families groups
(more info) |
| 2. |
build or join network of all involved parties and learn from
more experienced groups |
| 3. |
further early detection of disease, accurate diagnosis, genetic
counseling, guidance |
| 4. |
focus on peer-to-peer contact, coping with disease, limiting
disease burden |
| 5. |
identify opportunities & threats |
| 6. |
arouse interest in the medical, scientific, media and political
arena |
| 7. |
trace families / members |
| |
|
inform
and motivate members for trials |
|
| 8. |
contribute to better research infra structure, data banking,
monitoring course of disease, epidemiological studies |
| 9. |
stimulate cooperation on continental and/or international level |
| 10. |
contribute to implementation of results of scientific studies |
