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.
TABLE OF CONTENTS
Introduction — Why Self-Advocacy Matters
Principle 1 — Build a Strong Healthcare Team
Principle 2 —Get Up-To-Date Information
Principle 3 — Make the Most of Every Office Visit
Principle 4 — Keep Careful Track of Health Information
Principle 5 — Build a Strong Personal Support Team
Download the PDF: STANDING UP for your health