PRP Alliance

PRP Alliance


Before You Opt Out

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. But keep

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What is “Core” Data”?

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. ✽  Elapsed time between onset and diagnosis ✽  Elapsed time between onset and remission ✽  Onset age by decade of life ✽  Misdiagnoses ✽  Biopsies as a diagnostic tool ✽  Survey PRP patients in remission ✽  Survey PRP children

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Ichthyosis Registry

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 &

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PRP Newsletter Revival

Objective To resurrect the PRP community’s original newsletter. A total of 24 issues (598 pages) of On the Road … Our Journey from Onset through Remission were published during the period April 2014 through October 2015. Problem to be addressed The PRP Alliance does not “push” information to the PRP community. We depend on PRP patients and caregivers to

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