It has been an amazing journey with more road ahead.
Founded on February 8, 2013, the PRP (Pityriasis Rubra Pilaris) Alliance is a nonprofit patient advocacy organization. Our mission is to advocate for the timely and accurate diagnosis of pityriasis rubra pilaris (PRP), the implementation of more effective and accessible treatment options, and an increase in PRP-specific research.
PRP Alliance Milestones
- September 24, 2018 — Article in support of the Rare Skin Disease Referral Initiative (Rare Disease Patients A Need Roadmap) is published by The Dermatologist.
- February 25-March 2, 2018 — The PRP Alliance will seek financial support to enable participation at 2018 Rare Disease Week On Capitol Hill sponsored by the Rare Disease Legislative Advocates
- February 16-20, 2018 — The PRP Alliance will be represented at the American Academy of Dermatology 76th Annual Meeting to be held in San Diego, CA. This will be the fourth, face-to-face outreach to healthcare professionals in dermatology. An effort will be made to reach out to dermatologists, organizations and exhibitors to support the Rare Skin Disease Referral Initiative.
- November 3, 2017 — The PRP Alliance launched the Rare Skin Disease Referral Initiative by reaching out to the leadership of 88 teaching hospitals in the U.S.
- November 1-30, 2017 — The PRP Community celebrate PRP Awareness Month with an array of advocacy initiatives in support of the PRP Alliance mission.
- October 16-17, 2017 — The PRP Alliance participated at the Rare Diseases and Orphan Products Breakthrough Summit sponsored by the National Organization of Rare Disorders.
- September 13-17, 2017 — The PRP Alliance was represented at the EADY 26th Annual Congress in Geneva, Switzerland and the 2017 GlobalSkin Conference in Ferney Voltaire, France.
- September 10-12, 2017 — As an organizational member of the Coalition of Skin Diseases, the PRP Alliance participated at the 2017 American Academy of Dermatology Legislative Conference in Washington, DC.
- June 26, 2017 — The PRP Alliance website was reinstated, albeit an interim version pending future Board-inspired modification.
- March 3-7, 2017 — The PRP Alliance was represented at the American Academy of Dermatology 75th Annual Meeting held in Orlando, FL. This was the third, face-to-face outreach, to health care professionals in dermatology.
- January 12, 2017 — The PRP Alliance website suffered a catastrophic meltdown which resulted in the loss of the PRP Survival Guide and over 400 articles and 300-plus images. [Since then the PRP Survival Guide has been reconstituted and is available at prpSurvivalGuide.org.]
- November, 2016 — PRP Awareness Month represented an annual effort to shine a spotlight on pityriasis rubra pilaris and the challenges faced by patients and caregivers. The PRP Alliance became a member of the International Alliance of Dermatology Patient Organizations (IADPO).
- September 28-October 2, 2016 — The PRP Alliance was represented at the 25th European Association of Dermatology and Venereology Congress in Vienna, Austria.
- September 11-13, 2016 — The PRP Alliance was represented at the American Academy of Dermatology Association Legislative Conference in Washington, D.C. The PRP Alliance provided five representatives.
- October 7-11, 2015 — The PRP Alliance participated at the 24th European Association of Dermatology and Venereology Congress in Copenhagen in conduction with the formation of the International Alliance of Dermatology Patient Organizations.
- September 27-29, 2015 — The PRP Alliance participated in the American Academy of Dermatology Association Legislative Conference in Washington, D.C. The PRP Alliance provided two representatives.
- September 8, 2015 — The PRP Alliance was accepted as an organizational member in the National Organization of Rare Disorders. NORD membership has a prerequisite of 501(c)(3) tax-exempt status.
- July 8, 2015 — The PRP Alliance became the 16th 501(c)(3) to become a member of the Coalition of Skin Diseases which includes National Psoriasis Foundation and the National Eczema Association.
- June 6-13, 2015 — The PRP Alliance was represented at the International Dermatology Patient Organizing Conference in conjunction with the 23rd World Congress of Dermatology. Bill McCue, founder of the PRP Alliance, was elected to the Planning Board for the newly formed International Alliance of Dermatology Patient Organizations.
- May 20, 2015 — The PRP Alliance officially launched the PRP Survival Guide. An ever-expanding, online repository of PRP-specific information, the PRP Survival Guide was made available to anyone seeking information about PRP.
- May 7, 2015 — The PRP Alliance was awarded 501(c)(3) tax-exempt status by the Internal Revenue Service. The fees related to filing the application were donated by the PRP Community. Tax-exampt status was a pre-requisite to joining the National Organization of Rare Disorders and the Coalition of Skin Diseases.
- March 21-23, 2015 — The PRP Alliance was represented at the American Academy of Dermatology 73rd Annual Meeting held in San Francisco, California. This was the second outreach to healthcare professionals in dermatology.
- November 6, 2014 — The first “official” observance of PRP Awareness Day commemorated the signing of the Rare Diseases Act of 2002 was held to shine a spotlight on pityriasis rubra pilaris.
- April 1, 2014 — The PRP Alliance published the first issue of On the Road … Our Journey from Onset through Remission. Since the publication of the 11- page pilot issue, a total of 24 issues (589 pages) were published.
- March 20-23, 2014 — The PRP Alliance was represented at the the American Academy of Dermatology 72nd Annual Meeting held in Denver, Colorado. This was the first outreach to healthcare professionals in dermatology.
- December, 2013 — The PRP Alliance “adopted” the PRP Facebook Support Group. Membership was less than 200 PRP patients and caregivers. [As of July 2017, membership is nearly 1,000]
- November 6, 2013 — Using the 1,500-plus email addresses “harvested” from the PRP (email) Support Group PRP-L List archives, the PRP Alliance initiated the 2014 PRP Worldwide Census to gather basic core data. While over 500 of the emails were undeliverable, the census gathered data from over 500 participants. Core data include: onset date, onset age, misdiagnoses, diagnosis date, name of “diagnosing” dermatologist, name of “treating” dermatologist.
- November 1, 2013 — The PRP Alliance officially launched the website, prpAlliance.com. The domain name was later changed to prpAlliance.org when the PRP Alliance was incorporated as a nonprofit corporation and awarded 501(c)(3) tax-exempt status by the U.S. Internal Revenue Service.
- September, 2013 — The 2013 PRP Biopsy Poll was completed in September 2013 under the PRP Alliance banner. This survey documented the biopsy-related experiences of 256 PRP patients. The findings were published and made available to the PRP community.
- February 8, 2013 — Inspired by a steady stream of email messages from the National Organization of Rare Disorders promoting Rare Disease Day 2013 — the last day of February — Bill McCue registered the domain name prpAlliance.com and the PRP Alliance was officially launched as a sole proprietorship. It would take another eight months before the website would actually be launched.