Editor’s Note — The Aplastic Anemia & MDS International Foundation developed Standing Up for Your Health: Self Advocacy for Patients with Rare Diseases.a self-advocacy brochure that is worthy of note. It is unlikely that rank and file PRP patients and caregivers will go cover-to-cover and digest every jot and tittle.
With that in mind, the following represents the equivalent of CLIFF NOTES (circa 1964-1968, Assumption College. Go Greyhounds!) An effort will be made to provide links into the PRP Survival Guide pre-screened third-party websites.
- Principle 1 — Build a Strong Healthcare Team
- Principle 2 — Learn About Your Disease and Treatment Options
- 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