Bill McCue

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 […]

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

  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

    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

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Editor’s Note: With “sincere apologies for the slow pace,” our current contact at UCLA (Nolan Mahoney) has provided a long-awaited update. Nolan reports that three articles are in the queue for publication in medical journals. In otherwords, the pots we are watching belong to publications over which we – and UCLA – have no control.