NORD PRP Report Lights the Way for Travelers

From the Editor…

When I was diagnosed with pityriasis rubra pilaris on November 28, 2012, my evening was spent searching the internet. I was not pleased with the redundancy, medical jargon and “rat holes” into which I fell.

At some point that evening I accessed a 1,200- plus word overview of PRP. Even though it had not be revised since 2007, the source was credible and the text was patient-friendly. The National Organization of Rare Disorders (NORD) was there when I needed them.

The light of understanding had finally been ignited and I was ready for my journey.

It took five years to convince NORD to let a PRP patient coordinate a revision. On September 20, 2017, NORD replaced the 2007 PRP Report with the NORD PRP Report, 2017 revision. What had been a beacon of hope for me in 2012 was now shinning even more brightly for patients and caregivers challenged by the uncharted waters of PRP.

Here are some not-so-random observations:

(1) MORE WORDS

Total word count from 2007 to 2017 increased by 4,010 — from to 1,274 to 5,284.

(2) READIBILITY

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, at the time 7th Grader with atypical juvenile onset PRP, an opportunity to read the revision. Joey gave it a “thumbs up”.

(3) PEER REVIEW — PATIENTS FIRST

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) DERM REVIEW

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) MORE REVIEW

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) FINAL DRAFT

The final draft was sent to Marsha Lanes, Medical Editor for the 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, 2017 revision in the Top 5 whether they seek Dr. Google or Dr. Yahoo.


It took five years to rebuild the lighthouse and turn on the brightest light we could find. Thanks to everyone who has supported this effort.