1. Inform the society through the
media.
2. Inform people suffering from aniridia, doctors, hospitals and
organizations through brochures and the informative newsletter published every trimester.
3. Be up to date in everything referring to this illness through publications
and Internet.
4. Organize conferences for doctors and members, such as The First Forum on
Aniridia at School, held in May 1999.
5. Publish three books:
- What is Aniridia?
- Aniridia at School
- WAGR Syndrome
6. Participate in conventions and events related to this disease.
7. Belong to FEDER (Spanish
Federation of Rare Diseases) and EURORDIS (European
Organization of Rare Diseases), which share the problems of an unknown disease, often
forgotten by researchers, doctors, pharmaceutical companies and the government. |
