History of PC Project
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Pachyonychia Congenita is one of nearly 7,000 rare diseases of which 2,000–3,000 are rare genetic skin diseases. Over the last 10 years, PC has become well recognized in the scientific world and is becoming better known in the dermatology research community and dermatologists. Lacking the millions of dollars usually required, PC Project nevertheless has sponsored clinical studies, clinical research papers and on-going research projects. What is the story behind these achievements? Here are some brief 'tidbits' from the beginning days. . . . Please visit again for 'the rest of the story.'
2001 Schwartz family sent email requests to institutions and researchers, but received no response. We conducted research to identify rare disease organizations. We also contacted an attorney regarding organization of a charity. Then we saw the article “Saving Ryan” in Reader's Digest and we set the goal to seek a cure for PC.
Nov 2002 Schwartz family established inital funding for PC Project in a charitable gift account.
Oct 2003 First PC Project website posted to internet including grant award information. Citations for a PC bibliography were identified. Filed with the U.S. Internal Revenue Service (IRS) for status as a public charity
Nov 2003 Pachyonychia Congenita Fund (PC Fund) aka PC Project was incorporated as a US public charity under 501(c)(3).
Dec 2003 Bibliography (Published Research Articles) was posted to the website. A brochure for medical professionals and scientists was prepared. We held our first meeting with the Institutional Review Board (IRB) regarding our proposed research registry. PC Project offices were set up and a protected database established for communications and protected data... and we began with 3 PC patients!