7-PRP Advocacy

   Editor’s Note: This webpage provides an overview of the PRP Global Database as of July 1,  2020. ✱   What PRP-related data have we captured? What is still missing? ✱   Why is the data we seek so important to every member of the PRP global community? Whether you are a patient, loving caregiver (spouse, partner, or parent), an extended family

Editor’s Note: Lura R (East Texas, USA) primed the Land of Chat “Sharing Pump” on June 13, 2020 with an eight-word post. She wrote: “Does everyone else stay cold all the time?” What follows is the response from 18 kindred spirits. PRP Facebookers can access the unabridged version.  If you want to add your own two cents, use “Leave a Reply” at

Under Relentless Pressure Murray Rose Accepts Liaison Assignment Editor’s Note: While “relentless pressure” may be an overstatement, Murray Rose, (Surrey, British Columbia, Canada) has always been on my “short list” to help launch PRP Canada. How short was the list? Murray was the only name. The first symptoms of PRP appeared to Murray in August 2016 at the age

  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