Where were we in February 2013 versus February 2019?
✽ There was no PRP patient database. Today we have the PRP Global Database with 1798 PRP patient profiles.
✽ There was no PRP Survival Guide. Now we do.
✽ The PRP Facebook Community was still seven months away from becoming an official CLOSED GROUP. Today there are 1,474 PRP Facebookers representing 1,300 PRP patients.
✽ The PRP Community on RareConnect was over two years away from launch. Today there are over 300 members (308 to be exact) who have a non-Facebook option to share their PRP-related insights and observations.
✽ There were no PRP Meet & Greets. More and more PRP patients and caregivers are meeting face-to-face and via Facetime.
✽ The PRP community had no connection the National Organization of Rare Disorders, the Genetic and Rare Diseases (GARD) Information Center. Today, the PRP Global Community is a partner in building awareness.
✽ Only one patient-support website offered data (albeit revised in January 2005). Today both the prpAlliance.com and prpSurvivalGuide.org better positioned to be found by PRP patients and caregivers.
✽ PRP Research was limited to genetic research at Thomas Jefferson University. Today the PRP Global Community works with TJU, UCLA, USC, Yale, Kaiser Permanente, Oregon Health and Science University, and the Mayo Clinic in support of PRP research.
I need you support beyond the kind words and kudos.
✽ Renewing prpAlliance.org
✽ Renewing prpSurvivalGuide.org
✽ Renewing Constant Contact for the technology we use to support the 2019 PRP Global Census, surveys and distribution of newsletters
✽ Re-establishing a contract with GoToMeeting
✽ Creating an online PRP Meet & Greet application (computer/smartphone) to coordinate “Global Gatherings”
✽ Creating an online Find-a-Derm application to link PRP patients with dermatologists referred by fellow patients/caregivers AND to link PRP-savvy dermatologists with dermatologists seeking consults.
If you’ve been wondering how to help or if you’ve been wishing you could do something more, I welcome your contribution.
If you needed some “specifics” to justify a donation, I hope that the information provided here was enough. If you still have questions, please email me at firstname.lastname@example.org. If you live in North Texas, I like Denny’s. Or text meat 214-205-0574. If not…