Patients and associations play a vital role as admirable as any possible treatment of this rare and poorly known with no real treatment option before the advent of SCLEROGEL kit®.
These associations allow patients to express their views and advise on different purposes:
- To inform effective manner often patients and families a little lost in the maze of diagnosis and management
- To help each and reassurance in concrete on everyday life
- The proposed solutions to improve them and make them more relevant
The best known is the American foundation Birthmark (but especially with an international US-based): www.birthmark.org
But you can also visit Orphanet who regularly updates the knowledge on orphan diseases : Orpha.net