English is the main language of Pityriasis Rubra Pilaris (PRP) facebook group. Having alot of group type in Facebook: close, open and secret and it is a CLOSED group. They attracted 360 members. So it is a Small group. 15865278115 is the identifier of this group with Facebook. 2015-02-13 22:22:10 is the closest date we have information about it.
PRP FACEBOOK SUPPORT GROUP
With an ever-expanding membership, the PRP Facebook Support Group caters to Facebookers rather than Emailers, although 83 percent of the Facebook Support Group are also members of the original PRP Support Group. Many of the PRP Facebookers have fine-tuned their facebooking skills communicating with family and friends at breakneck speed sharing every jot and tittle of their existence. This private PRP Facebook Community conducts lively banter as they journey on the road to remission at full throttle. Facebookers share, console and vent—sometimes in the same sentence. If you already have a Facebook account—start right here. The immediacy of comments and “Likes” underscore the fact that members are not alone. Energetic exchanges between PRPers is a hoot to behold.
PRP SUPPORT GROUP (www.prp-support.org/)
Established in 1997, 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. Their website contains information about PRP, the Support Group itself, and other information sources."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." Go to www.prp-support group click Join Online Discussion in the vertical navigation bar, complete the form and check “Yes” to receive the daily digest.
PRP ALLIANCE (www.prpAlliance.com)
The PRP Alliance projects designed to build channels of communication within the PRP Community I have are “friends” from within the PRP Community who graciously share their experience and give me their two cents. Unlike the PRP Support Group has no subscribers or an archive of 30,000-plus documents going back to November 1997. Unlike the PRP Facebook Support Group there are no members engaged in 24/7 bantering.
The PRP Alliance has four areas that impact the PRP Community:
1. Publish a monthly PRP Community newsletter
2. Manage an ongoing census of PRPers worldwide to validate the prevalence rate of one “active” PRPer in 400,000 people
3. Identify PRP-savvy dermatologists who have diagnosed and/or treated PRP over the years and create an online registry for use by dermatologists (consultations) and PRPers (second opinions)
4. Manage the PRP Meet & Greet program that facilitates the face-to-face gatherings of PRPers worldwide.
Other Allied Organizations:
www.coalitionofskindiseases.org
www.firstskinfoundation.org