From the Editor… There is a point in the creation of every organization where someone has to decide on the name. For me, the PRP Alliance was easy. Even the PRP Survival Guide was effortless. But who thought that the Center for Information and Study on Clinical Research Participation would even fit on a business […]
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RDLA is a collaborative organization designed to support the advocacy of all rare disease groups. RDLA works to empower the individual to become an advocate by providing informational meetings, legislative resources, advocacy tools, and special events that support organizations and advocates working to promote rare disease legislation. The goal of RDLA is to bring the
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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: ❏½ Leg: “It’s like a pillar” ❏½ Tail: “It’s like a rope” ❏½ Trunk: “It’s like a thick tree branch” ❏½ Ear:
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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?
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03.00.03 A treatment Plan is more than drugs It’s time to refer PRP Patients to the PRP Alliance By Bill McCue, Patient Advocate My iPhone rang. It was a life-altering moment when my dermatologist’s office called to confirm my diagnosis: pityriasis rubra pilaris. It was November 28, 2012. At first there was a feeling of
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03.09.00 Preserving Patient Access to Treatments EDITOR’S NOTE: Since 2013, the AADA has been a member of the Coalition for Accessible Treatments (CAT), whose key priority is to advocate for enactment of H.R. 1600, the “Patients’ Access to Treatments Act” (PATA) sponsored by Rep. David McKinley (R-WV) and Rep. Lois Capps (D-CA). As a member
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