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.
After registering the domain name (prpAlliance.com) in February 2012, it took to another five month to launch a website 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.
While the PRP Facebook Support Group didn’t immediately catch on in 2008, there were less than 120 members by November 2013. Over time, seasoned “Facebookers” began to understand and appreciate the opportunities afforded by Facebook technology. Today, membership continues to ebb and flow — but there is more flowing than ebbing. Each month an average of 30 new members join. In August 2021 membership had surpassed 2,600.
Initially ia 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.
The 23rd World Congress of Dermatology was held in Vancouver, British Columbia in June 2015. Sixty patients diagnosed with a spectrum of skin disordered ratified the “Vancouver Resolution”. Today the International Alliance of Dermatology Patient Organizations (also known as GlobalSkin) is a global alliance of 183 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.
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.
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— including the GARD PRP Report. LEARN MORE