A: The Aspreva CellCept study was a good example of how things work in the market of rare diseases. Company will not try to find new drugs unless there is at least 1 billion dollars a year in sales. For our diseases, it is very tough to do that. Other parts of the world may help because trials are more likely to take place where there is universal healthcare.
Q: Is there a registry?
A: The Definitions study sponsored by the IPPF and the Centric/IPPF HMP are the seedlings of a methodical record of disease symptoms, treatment protocols, cross-medicine experiments and legitimate clinical trials. It all starts here.
Q: Are there organizations that have been successful in setting up a registry on their own?
A: Yes, XP Foundation has its own registry.