2019 Rare Skin Disease Referral Initiative

What is the Rare Skin Disease Referral Initiative?

Pityriasis rubra pilaris is one of 574 rare skin diseases. In fact, with a prevalence of only one in 400,000, there are only an estimated 808 patients under treatment in the U.S.

When a patient is diagnosed with pityriasis rubra pilaris (PRP), the dermatologist — with very rare exceptions — does not refer their patient to the PRP Alliance, PRP Survival Guide, PRP Facebook Support Group, or the PRP Community on RareConnect. Typically, the patient is referred to the internet where search engines (Google, Yahoo) retrieve information that can be redundant, insufficient, outdated, and written for an audience of healthcare professionals— not patients and their caregivers.

We believe that it is absolutely unreasonable to expect healthcare professionals to keep track of disease-specific patient support organizations and other patient-centric resources for rare diseases like PRP. But, how can a dermatologist make an informed referral to a third-party resource. How can the dermatologist be confident that the third-part is legitimate?

The solution is actually quite simple. When a patient is diagnosed with a rare skin disease (less than 200,000 effected patients in the US), the standard treatment protocol should include a referral to the Genetic and Rare Diseases Information Center (GARD). Moreover, the referral should be recorded in the patient’s electronic medical record.


What does a referral to GARD accomplish?

Reliable information about rare or genetic diseases is often hard for patients and caregivers to find. The Genetic and Rare Diseases Information Center, a program funded by the National Institutes of Health, offers a reliable roadmap to the resources they need.

✽  GARD website

✽  GARD Rare Disease Database  (Example: GARD PRP Report, Revised 11/2017)

✽  GARD Patient, Families and Friends

✽  GARD Information Specialists — Whether by phone, fax or email, the public has access to current, reliable, and easy-to-understand information in English or Spanish. Toll-free Telephone: 888 205-2311; Email: GARDinfo@NIH.gov/

✽  Referral to reliable third-party resources, e.g. the National Organization of Rare Disorders  and appropriate third-party resources, EXAMPLE:  NORD PRP Report, revised 09/2017)


What is our path forward?

Like any grassroots patient advocacy campaign, the effort begins at home. And for me, home is Texas with the perfect  infrastructure for outreach. The checkmarks (✔︎) indicate the initial focus of this grassroots advocacy effort.

Texas-based Dermatological Societies

✔︎  Texas Dermatological Society
✔︎  Dallas Dermatological Society
✽  Houston Dermatological Society

Texas-based Teaching Hospitals (Dermatology Departments)

✽  Baylor College of Medicine (Houston)
✽  University of Texas at San Antonio
✔︎  University of Texas Southwestern (Dallas)
✽  University of Texas , McGovern Medical School (Houston)

Texas also has the requisite channels of communication.

Texas-based Print Media (Health Editors)

✔︎  The Dallas Morning News (Healthy Living)
✽  Houston Chronicle
✽  Fort Worth Star-Telegram
✽  San Antonio Express-News
✽  Austin American-Statesman

DFW-based Television

✔︎  FOX — KDFW (4)
✔︎  NBC — KXAS (5)
✔︎  ABC — WFAA (8)
✔︎  CBS — KTVT (11)
✔︎  PBS — KERA (13)

Texas-based Public Radio (Texas Standard)

✽  KUT Austin
✔︎  KERA North Texas
✽  Houston Public Media
✽  Texas Public Radio San Antonio


What is the first step?

Everyone has the right to say, “No”. My job as a rare skin disease patient advocate, however, is to give every dermatologist in Texas the opportunity to say, “Yes”. And so it begins.


What is the second step?

If we can do it right in Texas, we will take what we learn and move on to the other 49 states.


For more information contact bill.mccue@prpAlliance.org