INDEX PRP Alliance

From the Editor
The PRP Survival Guide is a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. We need to harvest that knowledge for those in need of enlightenment.

Share what you have learned about PRP as a patient or caregiver. Share what you have been told by your dermatologist? Share articles  you feel might be worth reading or websites worth visiting. Please use “Leave a Reply” at the bottom of this webpage to answer the following question:

What do you want to know about the PRP Alliance?

SEE “REPLIE” BELOW

INDEX PRP Alliance

3 Replies to “INDEX PRP Alliance”

  1. The PRP (Pityriasis Rubra Pilaris) Alliance is a 501(c)(3), 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.

    ✽ Every PRP patient, young or old, begins their PRP journey at the same starting point: onset. We had no idea what was happening to our skin and the journey upon which we were about to embark.

    ✽ We reach the first milestone, diagnosis, only to discover a lack of PRP savviness among healthcare professionals. For too many of us, we are provided with the correct spelling of pityriasis rubra pilaris and aimed us in the direction of Dr. Google and Dr. Yahoo.

    ✽ After we digest the “official” diagnosis, our focus shifts to treatment where we learn: “What works for one doesn’t work for all.”

    ✽ And then there is the endgame. While most of us set our sights on remission, others must look to a more distant outcome: long-term management.

    And along the way, we are continually reminded that PRP is an ultra-rare disease and PRP-savvy dermatologists are just as rare.

  2. PRP Alliance Milestones

    March 3-7, 2017 — The PRPA attended the American Academy of Dermatology 75th Annual Meeting held in Orlando, FL. This will be the third, face-to-face outreach, to healthcare professionals in dermatology.

    January 12, 2017 — The PRP Alliance website suffered a catastrophic meltdown which resulted in the loss of over 400 articles and 300-plus images.

    November 6, 2016 — The PRP Alliance became a member of the International Alliance of Dermatology Patient Organizations (IADPO).

    September 28-October 2, 2016 — The PRP Alliance participated at the 25th European Association of Dermatology and Venereology Congress in Copenhagen in conduction with the formation of the International Alliance of Dermatology Patient Organizations.

    September 11-13, 2016 — The PRP Alliance participated in 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, 2014 — 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 22, 2015 — The PRP Alliance incorporated as a nonprofit corporation in the State of Texas. The fees related to incorporation were donated by the PRP community.

    June 6-13, 2015 — The PRP Alliance attended 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 International Alliance of Dermatology Patient Organizations.

    May 20, 2015 — The PRP Alliance launched the PRP Survival Guide. An ever-expanding, online repository of PRP-specific information, the PRP SURVIVAL GUIDE was available to anyone seeking information about PRP. Eventually the S=PRP Survival Guide would include nearly 500 articles.

    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.

    March 21-23, 2014 — 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 and helped 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) have been archived.

    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.

    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 on November 6, 2013 to gather basic core data. While over 500 of the emails were undeliverable, the census gathered data from over 500 participants.

    November 1, 2013 — The PRP Alliance officially launched the website, prpAlliance.com. The domain name 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 first 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.

  3. CURRENT MEMBERS OF THE BOARD

    Bill McCue, Founder & President: PRP patient in remission
    Plano, TX

    Nancy Wilson-Ramon, Vice President: Caregiver (PRP patient in remission)
    San Diego, CA

    Mary Holman, Secretary: Caregiver (PRP patient in remission)
    Novato, CA

    Virginia “Ginny” Maxwell, Treasurer: PRP patient (active) and caregiver (3 active children)
    Lexington, SC

    Dan McCauliffe, MD, Director: PRP patient (in remission)
    Rutland, VT

    Glen Misek, Director: PRP patient (in remission)
    Glenview, IL

    Tierney Ratti, Director: PRP patient (active)
    Virginia Beach, VA

    PAST MEMBERS OF THE BOARD

    Christine Günther, Past Director: Caregiver (one active PRP child)
    Zurich, Switzerland

    Burt Utley, Past Director: PRP patient (active)
    Kenedy, TX

    Will Sivilli, Past President, Vice President and Director: PRP patient (active)
    Tucson, AZ

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