PRP Alliance

PRP Alliance


We begin PRP 101 with the basics. Whether you are a newly diagnosed patient or supportive caregiver (spouse, partner, parent, family or friend), or a more “seasoned traveler”,  the questions we hear most often fall conveniently into two categories:

✽   Questions with answers you WANT to know

✽   Questions with answers you NEED to know

Please use “Leave a Reply” at the end of this webpage to ask a question or make a comment.


❏  The NORD PRP Report (circa 2017)
❏  The GARD PRP Report (circa 2017


❏   Is PRP contagious?|
❏  What constitutes a rare disease?
❏  Do we know what causes PRP?
❏  Is there a cure for PRP?
❏  The Dowling Oration — What’s Missing?
  What were my odds of getting PRP?
❏  What is my long-term outlook based on Type?
❏  What is the history of the name: PRP?
❏  How do we track the worldwide PRP community?
❏  What does a PRP parent need to know?


❏   PRP Glossary of Words, Terms & Jargon
❏  The Dowling Oration (pdf)
   Genesis of the NORD PRP Report
❏   What is PRP? (Multiple sources: DermNetNZ, Medscape, etc.)
❏   Why are PRP patient resources so hard to find?
❏   Asking Dr. Google about PRP
❏   Anatomy of Skin
❏  Genetics of PRP — CARD14
❏   National Organization of Rare Disorders
❏   Genetic and Rare Disease Information Center
❏  How do PRP symptoms progress?
❏  How important is it for you to know your type?

❏  What are the variations “types” of PRP?
❏  Is PRP an autoimmune or an autoinflammatory disease?
❏  Understanding autoinflammatory diseases (GARD)

MORE INFO LINKS (Patient/Caregiver Resources)

❏   PRP Survival Guide a.k.a. PRP 101
❏   PRP Facebook Support Group
❏   PRP Global Database 2020
❏   PRP Alliance, Inc

❏   PRP Community on RareConnect


❏  How is PRP diagnosed?
❏  Diagnosing PRP — More stuff to ponder
❏  Why is it so difficult to diagnose PRP? 

❏  Advocacy Goal: timely and accurate diagnoses
❏  How can I be sure the diagnosis is correct?
❏  What are the symptoms and signs of PRP?

❏  What at are the symptoms of PRP ? (Survey Results)


❏  Are diagnostic errors common a common medical mistakes?
❏  Measuring misdiagnosis
❏  Study: Getting Second Opinion
❏  What is the “Iatrogenic effect”?
❏  What are the life threatening aspects of a PRP misdiagnosis?


❏   Why have a skin biopsy?
❏   What is a dermatopathologist? — FUTURE
❏   What is a skin biopsy?
❏   What are the types of skin biopsies?
❏   What should the patient know about skin biopsies?
❏   What are the risks associated with a skin biopsy?
❏   How is a biopsy performed?
❏   What happens to the biopsy sample?
❏   What did we learn from the 2013 PRP Biopsy Poll?
❏   Overview of the 2013 PRP Biopsy Poll with Feedback (PDF)
❏   Advocacy Issues related to diagnosing PRP

MORE INFO LINKS ( Diagnosis Codes)

❏  ICD Coding for Rare Diseases from GARD
❏  Does your rare disease have a code?
❏  Were dermatologists ready for ICD-10?
❏   What is the ORPHA Number for PRP?