It’s time for me to resurrect the PRP newsletter. Twenty-four issues (an average of 24 pages per issue) were published between April, 2014 and October, 2015. It has taken me two and a half years to get myself to a point — mentally — where I can make another 24-issue commitment. The following webpage is an […]
A PRP Newsletter Reborn Read More »
From the editor… Every so often I lament the fact that after (or in spite of) six years I have been unable to create or inspire a community of PRP parents within the PRP Facebook Community. That doesn’t stop me from raising the issue again in hopes that a Coalition of PRP Parents & Kids
Coalition of PRP Parents & Kids Read More »
Editor’s Note: Each month members of the PRP Facebook Community start between 150 and 200 conversations that range from questions about “what works and what doesn’t work” to general appeals for advice. Since the start of PRP Awareness Month (November 1, 2018), well over 1,200 PRP Facebookers in the Land of Chat have been living up to their moniker.
Second Look — April, 2019 Read More »
The PRP Alliance is working with RareConnect, an initiative of EURORDIS, the international equivalent of the National Organization of Rare Disorders. The PRP Alliance is a member of NORD and supports the PRP Community on RareConnect — a multi-language, non-Facebook option for adults with PRP and the parents of children diagnosed with juvenile onset. RareConnect
The PRP Community on RareConnect Read More »
From the Editor… As a rule, PRP patients and caregivers are given the proper spelling of pityriasis rubra pillars, the acronym “PRP” and a referral to Dr. Internet. Some of us reach out to Dr. Yahoo. Others seek out Dr. Google. It doesn’t take long for us to learn that using PRP doesn’t work. Enter “PRP” and the
Asking Dr. Google? Read More »
NOTES Describe Juvenile Onset PRP ✽ We want to describe Juvenile Onset PRP rather than PRP in general ✽ This should be a general overview and include Type 3, 4 and 5 ✽ What are the SPECIFIC challenges facing PRP parents and PRP children? Describe your child’s version of PRP ✽ We want to describe the child’s SPECIFIC
School Letter Part 1 Read More »
From the Editor… For any PRP parent with a PRP kid in need of a summer experience in a PRP-friendly environment, consider Camp Discovery. What they say about themselves: Camp Discovery was founded in 1993 and offers a summer camp experience like no other. Every summer, the American Academy of Dermatology sponsors six weeks of
American Academy of Dermatology Summer Camp Read More »
From the EditorThe PRP Survival Guide is designed to be 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. Only we can harvest that knowledge.Share what you have learned about PRP parenting as a patient or a parent. Share what you have been told
PRP Parenting Index Read More »