Editor’s Note: If you had been diagnosed with eczema, then there would be 65 million of you to help. If you had been diagnosed with psoriasis, there would be 2.5 million to get involved.
Pityriasis rubra pilaris is a rare skin disorder with a patient population measured in hundreds, not thousands.
We depend on involvement. Our most cherished resource is YOU. Here is how you can help.
Participate in the PRP Worldwide Census
This is the easiest way to be a PRP advocate – share information about yourself. When combined wit the information from others, we learn information we can share with researchers. More about the Census
Participate in PRP Research
Whether “active” or “in remission”, regardless of the hemisphere in which you live, whether young or old, your are invited to be part of ongoing PRP research. Download and complete the PRP Research Study packet. Follow the instructions and return the completed forms to Thomas Jefferson University. Download Patient Study Packet
PRP Facebook Support Group
Established in April 2013, the ever-increasing membership asks questions pertaining to the treatment of pityriasis rubra pilaris and its symptoms – from onset through remission. PRP Patients and their caregivers share personal experiences and insights. Over 900 members have created a channel of communication within the worldwide PRP Community. Learn More.
PRP Community on RareConnect
Launched in April 2016, over 200 members are afforded the opportunity to document their PRP journeys for member-only review. While PRP Facebookers generally tell and re-tell portions of their journey as it applies to a specific question, the RareConnect format allows for the telling and updating of PRP testimonials. There is also the site of the “official” PRP Worldwide Map. Learn More.
What can I do to help?