The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy. Currently, there are fewer than 400 approved treatments for 7000 rare diseases affecting more than 30 million Americans. The science exists for many of these diseases to be treated; however, treatments may […]
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The National Organization of Rare Disorders (NORD) is dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 260 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. The PRP Alliance is a
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07.01.02 — International Alliance of Dermatology Patient Organizations International Alliance of Dermatology Patient Organizations — IADPO http://globalskin.org Founded on the three pillars of research, advocacy and support, the International Alliance of Dermatology Patient Organizations (IADPO) was officially created in Copenhagen, Denmark in October 2015, with the release of the Vancouver Resolution. A unique global alliance,
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Editor’s Note: If you had been diagnosed with eczema, then there would be 65 million of you to help. If you had been diagnosed with psoriasis, there would be 2.5 million to get involved. Pityriasis rubra pilaris is a rare skin disorder with a patient population measured in hundreds, not thousands. We depend on involvement.
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From the Editor… The Perspective Have you heard the parable from India about the six blind men who encountered an elephant.  Each blind man touched a different part of the animal and reported: ✽  Leg: “It’s like a pillar” ✽  Tail: “It’s like a rope” ✽  Trunk: “It’s like a thick tree branch” ✽  Ear: “It’s like a big
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07.00.02 — We may have found a way to facilitate a referral to a support group from a PRP-savvy dermatologist Why don’t dermatologists with patients diagnosed with PRP routinely refer those patients to the PRP Alliance, PRP Facebook Support Group and the PRP (email) Support Group? ✴Is it concern with regulations protecting patient health information? ✴Do
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From the Editor… During the Summer of 2014, an effort was made to encourage the worldwide PRP community to participate in a PRP research effort under the auspices of the Department of Dermatology and Cutaneous Biology at Thomas Jefferson University. The following members of the PRP Facebook Support Group offered words of encouragement. The effort
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06.01.12 Jean-Luc Deslauriers Memorial Research Award Since pityriasis rubra pilaris was first described in 1883, there has been a dearth of research to improve diagnosis and treatment. Why? Patient pool too small With a prevalence rate of one in 400,000, there has never been an easy-to-access pool of PRPers available to participate in PRP-related research.
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From the Editor… The following article from The Jerusalem Post is frequently referenced by PRP patients and caregivers. It was written by Judy Siegel-Itzkovich and published on June 17, 2012. Please note that the gene CARD14 is not the cause of pityriasis rubra pilaris, but rather the “genetic basis” for our disease. Dr. Jouni Uitto,
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From the Editor… To our knowledge, no clinical trials are currently underway regarding pityriasis rubra pilaris and any pharmaceutical in the pipeline. However, there is ongoing clinical and genetic research at Thomas Jefferson UnIversity. We need to foster more research. Perhaps the PRP community could ask PRP-savvy dermatologists to consider independent, case studies regarding the efficacy of
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