7-PRP Advocacy

How much do you really know about pityriasis rubra pilaris? What if you had the opportunity to test your knowledge against the infamous JEOPARDY! game board with it’s six categories, each category with five questions valued at $100, $200, $300, $400 and $500 respectively. How many of the 36 questions could you answer correctly? History for $100… […]

It’s a matter of time. For PRP patients and their caregivers, “Face-to-Face’ refers to the number of minutes you spend face-to-face with your dermatologist, e.g., monthly, bi-monthly, quarterly, semi-annually or annually. If your “Face-to-Face Time” per clinic visit is less than 15 minutes, you should find a new dermatologist. “Face-to-Face Time” is not chit chat time — it’s just “MY TURN,

Issues related to the financial challenges of PRP PRP patients and caregivers understand the physical challenges of PRP. We all know itch. We all know pain. We know the impact PRP has on vision, mobility, dexterity, and sleep. While the treatment protocols may vary in effectiveness, we can generally call upon healthcare professionals to help

From the Editor Gallery of Feet The challenges we face to body, mind and spirit can be debilitating, demoralizing,  and de-mobilizing. Of ALL the symptoms of pityriasis rubra pilaris I had to endure during my 20-month journey, it was my feet and the impairments to my mobility that topped my list. Swollen. Cracked. Bleeding. Painful. However, once my

So you think you want to help. I hope you will. From the Editor — On the Road…Our Journey from Onset through Remission is NOT a scholarly journal. The 12-page newsletter represents, however, the collective experiences, insights and observations of PRP patients and caregivers. It deserves a Peer Review by PRP patients and caregivers BEFORE it

This is a “landing page” for an article in the June 2020 issue of On the Road … Our journey from Onset through Remission. “Leave a Reply” below and I will confirm when this page is ready to review. Bill McCue

Message From Bill McCue, Editor   IMPORTANT: If you have been hurt financially by PRP and/or COVID-19, please do NOT bother reading this message. Just remember the mantra: Stay safe. One day at a time. I have successfully renewed three domains (prpAlliance.com, prpAlliance.org and prpSurvivalGuide.org) that support our PRP global community. We are good for another

I will try to process your PRP Patient Profile request within the next 24 hours. Then it’s your turn. 1.  Please review your PRP patient profile 2.  CLICK “Reply” 3.  Correct any information that is incorrect 4.  Add any information that is missing 5.  CLICK “Send” Thanks again for sharing your email address, location, onset date and

   Editor’s Note: This webpage provides an overview of the PRP Global Database as of June 8,  2020. ✱   What PRP-related data have we captured? What is still missing? ✱   Why is the data we seek so important to every member of the PRP global community? Whether you are a patient, loving caregiver (spouse, partner, or parent), an extended family

  The Genetic and Rare Diseases (GARD) Information Center is a program of the National Center for Advancing Translational Sciences. Funded by the National Institutes of Health, GARD supports a variety of programs to serve the needs of patients who have any one of approximately 7,000 rare diseases known today. Their rare disease database includes information