Rare Skin Disease Referral Initiative

Editor’s Note

When I was diagnosed with pityriasis rubra pilaris on November 28, 2012, I was entering my fifth month of angry skin, escalating pain, and profound hopelessness. It took two dermatologists, a week of hospitalization, and four biopsies before I was on the right road, albeit a steep and hazardous mountain.

Over the past seven years I have learned that PRP is a journey of indeterminate length that should not be undertaken alone. Patients and caregivers need access to the resources of an enlightened PRP community. We need to harvest the insights, experiences, and hope from other travelers, and seize upon each and every healing milestone. We are on this journey together.

But let’s face it — rare skin diseases get the short end of the stick when it comes to just about everything, e.g., research, funding, and the focused attention of healthcare professionals in the area of dermatology. We need a bigger stick!

The Rare Skin Disease Referral Initiative is an international, patient-inspired effort to educate and motivate dermatologists and dermatology physician assistants to refer all patients diagnosed with any rare skin disease to the Genetic and Rare Skin Diseases (GARD) Information Center. GARD is a program funded by the National Institutes of Health that currently maintains a database of 597 rare skin diseases — including pityriasis rubra pilaris. GARD and NIH represent a much larger stick for rare skin disease advocates to swing. A patient diagnosed with PRP will rarely be referred to a PRP community resource. However, a referred to GARD will help the patient navigate to an array of patient support resources to include:

❉  PRP Report: GARD  PRP Report: National Organization of Rare Disorders ❉  PRP Survival Guide ❉  PRP Facebook Support Group ❉  PRP Community on RareConnect  PRP Alliance, Inc.

Step 1: DONE — Reach out to teaching hospitals

How can we inspire dermatologists to routinely refer patients with a rare skin disease to the Genetic and Rare Diseases (GARD) Information Center? We started in November, 2018 (PRP Awareness Month) by reaching out to the chairs of dermatology departments at 88 teaching hospitals in the U.S.

Other than Dr. Kim Yancey, chair of the Dermatology Department at the University of Texas Southwestern (Dallas) where I was treated, no other teaching hospital responded. We did, however, proved that we could conduct a serious outreach effort. “Planting the flag” was the pre-requisite for Step 2.

Step 2: DONE — Pitch story to dermatology magazine

In mid-February, I attended my third American Academy of Dermatology annual meeting. While in San Diego I met with PRP researchers from UCLA and Oregon Health and Science University, and I had the opportunity to “pitch a story” about the Rare Skin Disease Referral Initiative to the editors of The Dermatologist, Dermatology Times, Practical Dermatology and Dermatology News.

The editor of The Dermatologist, a magazine with an audience of more than 20,000 dermatologists, accepted my offer to write an article about the Rare Skin Disease Referral Initiative for their June issue.  Mission Accomplished

Step 3:  DONE — Get story published

Originally scheduled for the June issue, I was disappointed when the article did not appear as promised. My frustration escalated when the article failed to appear in either the July or August issues. Even my emails to the editor went unanswered.  I “wallowed in despair” and “barked at the moon”.

The publication of the article about the Rare Skin Disease Referral Initiative in a major dermatology publication was an absolute pre-requisite for Step 4. On September 9, however, I received an email from the associate editor of The Dermatologist confirming that my article was scheduled for the September 2018  issue. Apparently the editor had left the company, but my article survived. Mission Accomplished


Step 4:  PATH FORWARD — Execute Outreach

Both the print and digital versions of the  September issue of The Dermatologist will be published on September 24th. We will have something to share with the dermatologists of the world. What do we want dermatologists to do?

Our advocacy campaign seeks to have dermatologists, dermatology physician assistants, and even dermatology nurses to (a) read the article in The Dermatologist, (b) refer ALL their current patients diagnosed with a rare skin disease (including PRP) with the Genetic and Rare Diseases (GARD)  Information Center, and (c) share information about GARD with their colleagues.

What are the channels of communication?

 1,706 PRP patients/caregivers, whether active in remission, could contact their own dermatologist or dermatology team

❉  88 teaching hospitals. This time, rather than reach out to the chairs, let’s reach out to the chief resident and a few clinicians. Could be via snail mail or email.

❉  Press releases to dermatology-related publications. The Rare Skin Disease Referral Initiative is NEWS and the article in The Dermatologist gives us the credibility.

❉  Press releases to the pharmaceutical companies marketing treatments used by PRP patients, e.g., Stelara, Cosentyx, Humira, Enbrel, etc.

❉  Press release to the National Organization of Rare Disorders. NORD has vast resources for advocacy efforts and the PRP Alliance is a member.

❉  Press releases to the 597 rare skin diseases listed in the GARD database.

❉  Press releases to dermatology-oriented organizations, e.g., American Academy of Dermatology and their 92 separate state and local societies.

 Facebook campaign.

How can you help?

This is where you enter the picture by adding FOUR simple tasks to your To-Do list and a plea:

(1) Read the story and understand the rationale behind the Rare Skin Disease Referral Initiative. FULL STORY

(2) Ask your dermatologist to read “Rare Skin Disease Patients Need A Roadmap”. Call or send an email today. Don’t wait until you next appointment. Provide the link to the story:


(3) Confirm the contact information for your dermatologist so I can send a letter, post card or email with additional information about the Rare Skin Disease Referral Initiative and resources available to patients with a rare skin disease — including PRP. CLICK HERE to complete the Outreach Confirmation Survey.

(4) Share the VOICES article on your Facebook page. The Referral Initiative can impact ALL types rare skin diseases. Everyone has a need to know.

(5) Finally, support the outreach effort with a contribution to the PRP Alliance.  Whether stamps, toner, printing, or reimbursement of out-of-pocket expenses, we need to start funding this effort.  GO TO DONATE

Please share your thoughts, suggestions and/or advice via email to editor@prpSurvivalGuide.org