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:
❏½ Questions with answers you WANT to know
❏½ 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.
MUST READ LIST
❏ The NORD PRP Report (circa 2017)
❏ The GARD PRP Report (circa 2017
COMMON QUESTIONS
❏ 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?
MORE INFO LINKS
❏ 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
COMMON DX QUESTIONS
❏ 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)
MISDIAGNOSING PRP
❏ 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?
MORE INFO LINKS (Biopsies)
❏ 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?
