Tag Archives: hmp

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Are you looking for a way to contribute first-hand to a larger goal that may help you and other people living with pemphigus/pemphigoid (P/P) Many medical professionals agree that since P/P is rare, gathering accurate and complete information on the disease is especially important. The Health Management Program registry has been established in order to better understand the progression of P/P, as well as the different ways in which P/P affects people.

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Q: Are there incentive for drug companies to pursue better drugs?
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.