PRP Survival Guide

Pasted graphic of self advocacy

Standing Up For Your Health

On June 3, 2015, the PRPA Alliance participated in a conference call arranged by the National Organization of Rare Disorders (NORD) that included an announcement by John Huber, executive director of the Aplastic Anemia & MDS International Foundation (AA&MDSIF). Supported by a grant, John’s organization had been working on a self-advocacy brochure for patients with rare diseases for five years. 

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”. 

For a licensing fee of $1, the PRP Alliance was authorized to use the 62-page document without restriction.

The PRP Survival Guide will turn a spotlight on Self-Advocacy during 2023. The goal is to write the PRP version of Standing Up For Your Health with commentary from PRP patients, PRP caregivers and a carefully selected group of PRP-savvy dermatologists.

We begin by sharing the five principles — one at a time — over the next few months . We start with principle 1.

  • Principle 1 — Build a Strong Healthcare Team (Dec 9)

  • Principle 2 — Learn About Your Disease and Treatment Options (Dec 29)

  • Principle 3 — Make the Most of Every Office Visit (Jan 12)

  • Principle 4 — Keep Careful Track of Health Information (Jan 26)

  • Principle 5 – Build a Strong Personal Support Team (Feb 2)

Self-advocacy is a strategy that the PRP global community can adopt and implement on a patient-by-patient basis. Let’s see where this effort takes us in 2023.