DATE: Friday, August 1, 2014
TO: All PRPers and Surrogates—Status: Active and Remission
FROM: Bill McCue—PRP: Type 1; Onset: 08/08/2012 at age 66; Remission: 04/08/2014
SUBJECT: The PRP Alliance is in transition…on our own journey
The EAB and Data Policy Standards
The PRP Alliance EAB was formed to provide advice and counsel to what had been a one-man operation. Over the past two weeks there has been heated discussion on issues related to collection, security, codification, publishing and privacy of data. As painful as some of these discussions were at times, the EAB was able to accept the PRP Alliance Data Policy Standards. It is a start. (Pages 1-3)
PRP World Awareness Day
What a grand day November 6, 2014 will be. For one day the PRP Community won’t act like a rare disease. We will hoot and holler at each other, to our dermatologists and to the American Academy of Dermatology. We will recognize the insight of 1,000 PRP-savvy dermatologists and work to enlighten the rest. We will Meet & Greet fellow PRPers who share the journey. It’s our disease and our day. (Pages 4-5)
PRP Data Initiatives
The PRP Alliance is supporting three PRP Data Initiatives to identify PRP-savvy dermatologists in Switzerland, New Zealand and now Arizona. Each of these efforts will help develop a strategy to use in 49 other states and other countries around the world. Christine Günther, Switzerland; Nicola Galt, New Zealand; and Sharon Taylor, Arizona. (Page 6)
The PRP Survival Guide
Make no mistake—the building of a PRP Survival Guide might be seen by some as a “Fool’s Errand”. The PRP Community is so tiny. So why invest so much energy into a resource that will serve an estimated 792 PRPers in the U.S., 158 in the UK, 88 in Canada and 58 in Australia. The answer is simple: We can, so why not? This issue describes how the Survival Guide will be built. (Pages 7-14)
The stories you will read: How one surrogate put a logo design for PRP World Awareness Day on the PRPA’s front burner and the pivotal role the Mayo Clinic in Scottsdale, Arizona will soon play. (Pages 15-18)
Link to the August Issue
While you may access of the PRP Community newsletters via the Newsletter Archives “button” below, here is a short cut to the August Issue. Click the following boldface blue link.
PRP Alliance continues to move forward on many fronts. Click a boldface red link below and you will be delivered to the appropriate poll or survey you seek.
- Registry of PRP-Savvy Dermatologists
A total of 403 PRPers have identified 621 dermatologists as PRP savvy. The goal is 1,000 PRP-savvy dermatologists in time for the American Academy of Dermatology 73rd Annual Meeting in March 2015.
- PRP Community Newsletter Archives
For nearly 16 1/2 years the PRP Community has been in a communication vacuum. On April 1, 2014 a new channel of communication was introduced…a newsletter. Nine issues and 130 pages in four months. We are definitely making up for lost ground.
Over 400 PRPers submitted a census form during the period November 6, 2013 and February 28, 2014 (World Rare Disease Day). Our goal is to have 1,000 completed census forms by November 6, 2014 (PRP Awareness Day). Please stand up and be counted.