PRP Alliance

PRP Alliance

Genesis of the NORD PRP Report

From the Editor…

The light has finally been turned on.

As of September 20, the National Organization of Rare Disorders (NORD) has replaced the 2007 PRP Report with the 2017 revision. We now have a beacon of hope for PRP patients and caregivers to find as they travel the uncharted waters of pityriasis rubra pilaris.

Here are some not-so-random observations:

(1) Total word count increased by 4,010 — from to 1,274 to 5,284.

(2) One of the NORD guidelines for their rare disease reports is that they be written for the 8th grade level. We did one better. We gave one of Ginny Maxwell’s twin boys, a 7th Grader with atypical juvenile onset PRP, an opportunity to read the revision. Joey gave it a “thumbs up”.

(3) The FIRST DRAFT was made available to the PRP community via the PRP Facebook Support Group. I considered this to be my “Peer Review” by fellow PRP patients and caregivers. Comments and corrections were made as appropriate.

(4) The SECOND DRAFT was made available to dermatologists via their PRP patients. While the overall response was disappointing, the comments and corrections were incorporated as appropriate.

(5) An updated SECOND DRAFT was provided to what you might call an “Unofficial” Editorial Advisory Council. We got great response from:

✽  Mark Lebwolh, MD, Chairman, Dermatology Department, Icahn Medical School, Mount Sinai Hospital, New York, NY;

Jouni Uitto, MD, PhD Professor and Chair, Department of Dermatology and Cutaneous Biology, Thomas Jefferson University, Philadelphia, PA;

Nicholas Ross, MD, Lead Investigator and Resident Physician, Department of Dermatology and Cutaneous Biology of Thomas Jefferson University, Philadelphia, PA;

Teri Greiling, MD, PhD, Assistant Professor of Dermatology, Oregon Health & Sciences University, Portland, OR;

Kelsey Brown, Medical Writing Specialist, UCB BioSciences, Inc., Raleigh, NC; and

✽  Jan Tennant, PRP patient, former Information Analyst, Pfizer, Inc., Ringwood, NJ

(6) The FINAL DRAFT was sent to Marsha Lanes, Medical Editor for NORD Rare Disease Database. It was accepted and approved by NORD with minor formatting changes.

When a newly diagnosed PRP patient or caregiver — or even a dermatologist or other healthcare professional — looks up “pityriasis rubra pilaris”, they will find the NORD PRP Report (circa 2017) in the Top 5 and the PRP Alliance referenced in 5 of the top 10 results, e.g., (#1 of 10)  DermNet New Zealand, (#2 of 10) Medscape, (#3 of 10) National Organization of Rare Disorders,  (#4 of 10) Genetic and Rare Diseases Information Center,  (9) British Association of Dermatologists.

It has taken four years to build the lighthouse and two months to turn on the brightest light we could find. Thanks to everyone who has supported this effort.