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 […]
PRP, Stress and Triggers Read More »
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
PRP, Sleep & Sleep Deprivation Read More »
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
Shedding and Flaking Read More »
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
PRP and Scalp-related Issues Read More »
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
PRP, Relapses and Setbacks Read More »
From the Editor The PRP community needs a PRP Patient Registry. The following is a broad overview of issues related to Patient Registries and Natural History Studies. WHAT IS A PATIENT REGISTRY ❏½ A registry is a collection of information about individuals, usually focused around a specific diagnosis or condition. – NIH ❏½ Contact registries
PRP Patient Registry Read More »
What do you want to know about the PRP Alliance? The PRP (Pityriasis Rubra Pilaris) Alliance is a nonprofit, patient advocacy organization incorporated in the State of Texas. The stated mission the PRP Alliance is to advocate for the timely and accurate diagnosis of pityriasis rubra pilaris (PRP); the implementation of more effective and accessible
How To Join The PRP Facebook Support Group For those who are seasoned Facebookers, the PRP Facebook Support Group is relatively easy to find. ❏‰ Step One – Go to Facebook.com ❏‰ Step Two – Locate “Search for people, places and things” ❏‰ Step Three – Enter: “Pityriasis Rubra Pilaris (PRP)” ❏‰ Step Four –
How To Join the PRP Facebook Support Group Read More »
From the Editor RareConnect is an initiative of EURORDIS, the international equivalent of the National Organization of Rare Disorders. Overview RareConnect provides a “safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. RareConnect partners with the world’s leading rare disease patient
PRP Community on RareConnect Read More »