Pityriasis Rubra Pilaris Support Group

Welcome to the Pityriasis Rubra Pilaris (PRP) Support Group

This international support group was established for people diagnosed with the a rare skin disease Pityriasis Rubra Pilaris (PRP).

The PRP 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 at the top of each page 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)

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 people, who have remained with the group to support others and participate in our online community.

As of March 2014, there are nearly 600 people subscribed to the PRP-L 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.