We’re fresh off of the delight of connecting with everyone available at the Annual Meeting (AM) in Philadelphia. Read more in this issue and visit our website at www.pemphigus.org/2010AM for additional materials.
The IPPF capstone project for 2010 is documenting 1,000 pemphigus/pemphigoid patient medical data records in our Registry — launched at the AM. This many records in the registry places us in position to ask for funding to support a research grant, inspire a scientist to conduct research, or provide data to move drug company developments in treatments.
Last year we addressed personal patient support needs with the Health Management Program (HMP). If you need personal support managing your disease, have specific questions, or want to discuss options with someone who’s been there, you need the Health Management Program and a relationship with one of our Peer Health Coaches (PHC). (See Dr. Sirois’ article on the demonstrated benefits in improved heath from participation on page 4) Let us know and we can set you up.
The Registry is an animal of a different stripe. In the Registry, instead, we need something from each one of you — we need your data — all confidential, of course (read more about our Registry’s privacy policy at www.pemphigus.org/registry-terms). Not “우리” so much, but P/P patients of the future. For the benefit of the future collective of P/P patients, we need you to complete the registry so your challenges can be counted and addressed.
We will be sending every patient that we have email contact with a unique log-in to privately enter your information from your personal computer. Please, please take the 15 minutes or so to document your experience and illuminate the urgent needs of this community — for awareness, resources, scientific discovery and everyday solutions. Last year we asked you to dig deep to help us leverage the opportunity for a matching grant of financial support. This year we need to dig deep to make the collective of your voices and experiences heard — for everyone’s progress.
We are at an exciting milestone, providing proof of the burden of disease and the path to discovery of effective new treatments. Please dig deep, once again — this year with your time — to support this community.
If you don’t, who will?
