October 2, 2024 AN URGENT MESSAGE TOALL MEMBERS OF THEPRP FACEBOOK GROUP With no warning, Facebook Technology (artificial intelligence) removed the PRP Facebook Group I immediately appealed. Within a few hours my appeal was summarily denied and our PRP Facebook Group simply vanished. Nearly 2,371 members lost access to important healthcare information. Unless retrieved, […]
Message to Members Read More »
From the editor… Every so often I lament the fact that after (or in spite of) six years I have been unable to create or inspire a community of PRP parents within the PRP Facebook Community. That doesn’t stop me from raising the issue again in hopes that a Coalition of PRP Parents & Kids
Coalition of PRP Parents & Kids Read More »
From the Editor… The PRP Alliance utilizes the email technology developed by Constant Contact. They manage our email list, facilitate email distribution and provide the support for email design. No one is forced to be on the PRP Community Email List. You can unsubscribe at the bottom of any email you receive. It’s that simple.
Before You Opt Out Read More »
The following datapoints represent the “core” data collected via the PRP Worldwide Census. With this information we can build a more accurate profile of the PRP community. ❏½ Elapsed time between onset and diagnosis ❏½ Elapsed time between onset and remission ❏½ Onset age by decade of life ❏½ Misdiagnoses ❏½ Biopsies as a diagnostic
What is “Core” Data”? Read More »
From the Editor – I began writing the PRP Survival Guide in November 2013. At first I collected information readily available on the internet which was, unfortunately, redundant, incomplete and too often written for an audience of healthcare professionals. By April 2014 it had become apparent to me that original articles needed to be developed
PRP Survival Guide Needs Assessment Read More »
The mid-November issue of the PRP community newsletter was just emailed to 1,009 PRP patients/caregivers. If you didn’t receive an email from me, then (1) you either don’t have your email address listed in the PRP Community Database, (2) or the email address we have is undeliverable, or the newsletter ended up in “junk mail”.
Mid-November Issue of On the Road… available Read More »
Have you received a genetic diagnosis? Now is the time to GET DIAGNOSED and join FIRST in playing an important role in ichthyosis research. FIRST is co-sponsoring a transformational scientific endeavor with one of the world’s leading institutions in ichthyosis research, Yale University. We encourage you to take part. The National Registry for Ichthyosis &
Ichthyosis Registry Read More »
The BRight Side of a Dark Day Jan Tennant 11 hrs June 15 In the realm of the remarkable: I got a bad scrape on my forearm two days ago. It swelled up, got very red, and was like any other scrape. Today it is almost gone! Also, have I mentioned that all the age
On Our Radar — Land of Chat Read More »
There is no excerpt because this is a protected post.
Protected: Breakthrough Summit Links Read More »