REQUIRED READING

Whether you are a PRP patient or a PRP caregiver, The NORD PRP Report (National Organization of Rare Disorders) and the GARD PRP Report (Genetic and Rare Diseases Information Center, National Institutes of Health) provide an  easy-to-understand overview of pityriasis rubra pilaris.

Both the NORD PRP Report and the GARD PRP Report include a Google Translate button for those who prefer an alternative to English.

PRP patients and PRP caregivers should be especially encouraged to share the link to the 5,000-word NORD PRP Report with family, friends and healthcare professionals. 

HOW TO TELL YOUR STORY

Whether you are a patient or caregiver, you should be prepared to tell your story to others? Your audience may be a loving member of your family or a rude and insensitive onlooker in the checkout line at Walmart. Let’s make sure that your ducks are lined up. 

GLOSSARY OF PRP WORDS & JARGON

The goal of the PRP Glossary of Words & Jargon is to QUICKLY take some of the mystery and fear out of PRP… not a lot …  just a wee bit. If pityriasis rubra pilaris has left you numb, scared, confused and isolated, then the PRP Glossary may be a brief detour on your PRP journey. You be the judge.

HOW TO FIND
A PRP-SAVVY DERMATOLOGIST

It has been estimated that only one in 20 dermatologists will diagnose or treat pityriasis rubra pilaris during their professional careers. Whether your goal is to obtain a second opinion and reconfirm your PRP diagnosis or find a local dermatologist who has prior experience treating PRP or find a more inquisitive dermatologist who wants to become PRP-savvy, have a plan.

PRP GLOBAL RESOURCES 

Every PRP patient and PRP caregiver should be aware of the available resources, e.g., PRP Facebook Support Group, PRP Global, Database, GlobalSkin, etc.

 

STANDING UP FOR YOUR HEALTH

In 2016, the Aplastic Anemia & MDS International Foundation received a grant to develop a self-advocacy brochure for patients with rare diseases. Standing Up for Your Health: Self Advocacy for Patients with Rare Diseases, is more than a brochure, it’s a strategy worthy of note. While it is unlikely that rank and file PRP patients and caregivers will go cover-to-cover or adopt all of the suggestions, but, as they say, “There’s gold in them dar’ hills”.