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Welcome to the Pityriasis Rubra Pilaris Support Group
The PRP Support Group
This international support group was established for people diagnosed with a rare skin disease, known as Pityriasis Rubra Pilaris (PRP). The Support Group was formed in 1997 under the kind and compassionate leadership of Jean-Luc Deslauriers (1948 - 2003), who lived in New Brunswick, Canada.
The primary goal of the Support Group is to provide a forum for people to share information about PRP, including their experiences, anxieties and treatment options, and to provide mutual support to each other.
This website contains information about PRP, about the Support Group itself, and other information sources. Please use the menu on the left side of each page, and the links highlighted in blue, to navigate your way around this site.
Thomas Jefferson University - PRP Research Phase II
Thomas Jefferson University, in Philadelphia, USA, continues with its ongoing PRP research. Phase II of this research is highly important, and anyone who currently has PRP, is in remission or who has previously had PRP, is now invited to participate in this second phase by downloading the Patient Study Packet, completing the questionnaire and consent form, and returning the completed forms to Jefferson's clinical research office. (Added Feb 2014) [Adobe PDF format]
For more details, see the Research section of this website
What is PRP?
Pityriasis Rubra Pilaris is a rare and chronic skin disorder. Symptoms include reddish orange discolouration scaling, and severe flaking of the skin. Dr. W.A.D. Griffiths (England) has classified six forms of PRP. At this time, the cause of PRP is unknown, and a cure is also unknown.
The disease affects persons of all ages, races, and nationalities. Both sexes are affected equally. Many Support Group members report a varied clinical progression of the disease.
Both an inherited (familial) and an acquired form of PRP have been reported in the medical literature. The inherited form starts early in childhood and is persistent throughout life, whereas the acquired type may occur at any age. The acquired form usually shows a gradual remission but some patients continue to have trouble for many years. The disease is rare but no exact incidence has been reported. [More information].
What is the PRP Support Group?
The PRP Support Group is made up of people from all corners of the globe that have been affected in some way by this rare skin disease. The support group includes not only people with PRP, but also their partners, families and friends. The group also includes some former suffers (in remission), and a small number of misdiagnosed poeple, who have remained with the group to support others and participate in our online community.
As of March 2012, there are over 450 people subscribed to our mailing list. Through the mailing list, the group exchanges information on PRP, its possible causes, cures and treatments, and provides mutual support to each other. [More information].
Contributed articles and other PRP information
Some of our Support Group members have contributed articles and information about different aspects of PRP including: Questions and Answers for all new members; Personal Stories that reflect individual experiences; and a comprehensive reference Bibliography. Please review these and other areas of our growing web site.
Recent changes and additions
Research project on causes of PRP needs patients, (Added 21 Oct 2012) [Adobe PDF format]
A systematic review of the literature on the treatment of pityriasis rubra pilaris type 1 with TNF-antagonists, G. Petrof et al., 2012. Journal of the European Academy of Dermatology and Venereology. (Link added 17 Mar 2012)
You can now search our website using Google Custom Search ... try it out! (added 4 Mar 2011)
Pityriasis rubra pilaris - The Scarlet Pimpernel, Dr. W.A.D. (Andrew) Griffiths. An edited version of the Dowling Oration lecture presented by Dr. Griffiths in Liverpool, England, 2003. (link updated 29 Jul 2010) [Adobe PDF format].
An overview of Type 1 PRP phases (added 25 Aug 2007) [Adobe PDF format].
The PRP-L mailing list has been moved to a new server. Unfortunately the old server used by the mailing list had a major failure on 1st October, and it was neccessary to recreate the list on a new server.
Support Group survey results (added 20th August 2006)
Medications and Treatments page (formerly "Prescription Drugs") (updated 29 Apr 2006)
PRP images, Dermatology Information Service (DermIS) (added 23 Mar 2006)
Children with PRP. (added 21 Jan 2006)
Dayne has shared her experience as a caregiver to her husband, Gardner. Read their story about PRP (added 21 Jan 2006).
Lorna's article published in the Dermatology Nursing Journal (added 22 Dec 2005) [Adobe PDF format].
Racheal has provided us with an update 3 years after developing PRP (added 19 Dec 2005).
Caroline has updated her article about PRP and the eyes (updated 10 Dec 2005) [Microsoft Word document].
Brian describes his experience with PRP and the need to keep a positive attitude (added 10 Dec 2005).
The PRP bibliography is a comprehensive listing of published medical and scientific articles (updated Dec. 2005).
Ruthanne and Lorna have written an extensive FAQ (Frequently Asked Questions) about PRP (updated 15 Jan 2005).
Some of the articles on this site are in Portable Document Format (PDF), which requires a PDF reader to view the file. If your computer doesn't recognise the PDF file, you can get the Adobe PDF Reader here