June 2020

Information previously found on this webpage has been updated, revised and enhanced. CLICK HERE to access new webpage.    

Message From Bill McCue, Editor   IMPORTANT: If you have been hurt financially by PRP and/or COVID-19, please do NOT bother reading this message. Just remember the mantra: Stay safe. One day at a time. I have successfully renewed three domains (prpAlliance.com, prpAlliance.org and prpSurvivalGuide.org) that support our PRP global community. We are good for another

I will try to process your PRP Patient Profile request within the next 24 hours. Then it’s your turn. 1.  Please review your PRP patient profile 2.  CLICK “Reply” 3.  Correct any information that is incorrect 4.  Add any information that is missing 5.  CLICK “Send” Thanks again for sharing your email address, location, onset date and

   Editor’s Note: This webpage provides an overview of the PRP Global Database as of June 8,  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

  The Genetic and Rare Diseases (GARD) Information Center is a program of the National Center for Advancing Translational Sciences. Funded by the National Institutes of Health, GARD supports a variety of programs to serve the needs of patients who have any one of approximately 7,000 rare diseases known today. Their rare disease database includes information

    Genetic and Rare Diseases (GARD) Inforation Center GARD, a program of the National Center for Advancing Translational Sciences, is funded by the National Institutes of Health. The office supports a variety of programs to serve the needs of patients who have any one of approximately 7,000 rare diseases known today. Their rare disease

From Bill McCue, Editor In 2008, Jonah Grant-Scarfe, a PRP sufferer from Canada, recognized the value of Facebook as a tool with which to share PRP-related insights and experiences with fellow PRP patients. The PRP Facebook Support Group didn’t immediately catch on. In fact, it took five years just to reach the 100-member milestone. The following update covers