From the Editor — The following resources should be shared with your dermatologist during your next clinic visit. He or she should be encouraged to share the information with other PRP patients.

PRP Alliance 

After registering the domain name (prpAlliance.com) in February 2012, it took another five months to launch a website and establish a nonprofit patient advocacy organization.

The mission of the PRP Alliance is to advocate for the timely and accurate diagnosis of pityriasis rubra pilaris (PRP), the implementation of more effective and accessible treatment options, and an increase in PRP-specific research.

PRP Support Group

The Facebook-based PRP Support Group didn’t immediately catch on in 2008. Over time, however, seasoned “Facebookers” began to understand and appreciate the opportunities afforded by technology. PRP Facebookers generate 120-150 posts and over 2,500 comments per month. If you are a PRP patient or caregiver and not yet a member of the PRP Support Group, consider joining today. LEARN MORE.

PRP Survival Guide

Initially an ever-expanding section within the PRP Alliance website, the PRP Survival Guide became a standalone website in May 2015, Today it offers members of the PRP global community an ever-increasing repository of PRP insights and experiences.

PRP Global Database

The PRP Global Database was created in November 2013 with the conduct of the first PRP Global Census. Today the database maintains over 4,500 PRP profiles of which 1,521 are considered “actively involved with the PRP global community. 

GlobalSkin

The 23rd World Congress of Dermatology was held in Vancouver, British Columbia in June 2015. Sixty patients diagnosed with a broad spectrum of skin disorders ratified the “Vancouver Resolution”. Today the International Alliance of Dermatology Patient Organizations (also known as GlobalSkin) is a global alliance of 200-plus patient organizations representing 65 diseases in 61 countries. The PRP global community is actively participating in a five-year “Quality of Life” research project that began in 2017.

NORD

The National Organization of Rare Disorders is a patient advocacy organization dedicated to individuals with rare diseases and the organizations, like the PRP Alliance, that serve them.  NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services including the NORD PRP Report.

GARD 

The Genetic and Rare Diseases (GARD) Information Center is a program of the National Center for Advancing Translational Sciences (NCATS) and funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI). GARD provides the public with access to current, reliable, and easy to understand information about rare or genetic diseases in English or Spanish.