Under Revision

The word advocacy has been around for quite some time.

✽  Middle English and Old French advocacie
✽  Medieval Latin advocatia
✽  Classical Latin advocatus

From the perspective of a patient diagnosed with pityriasis rubra pilaris, there are six levels of advocacy. But let’s start with a composite definition of advocacy.

✽  Advocacy is an act or process that can be either verbal or in writing and range from pleading to forceful persuasion

✽  Advocacy can be very public or conducted in private, behind the scenes

✽  Advocacy is typically in support of a cause, idea, proposal, or a specific proposition or call to action. There are times when advocacy is against specific proposition. For example, the National Organization of Rare Disorders argues passionately in favor of the Orphan Drug Tax Credit and against the provision of the Tax Cuts and Jobs Act that would substantially weaken the ODTC.

✽  Advocacy typically has an end game with the recommendation of a course of action or a specific outcome

 

There is so much to justifiably lament about pityriasis rubra pilaris. Ask any patient or caregiver. On so many levels we get the short end of the stick, e.g., misdiagnoses, access to affordable treatment options, research opportunities, etc. That is why advocacy is so important.  Here are ways PRP patients and caregivers, as well as the PRP Alliance are taking action.

Self-Advocacy

The Cause: As PRP patients and caregivers we have both the right and responsibility to advocate for the best care possible.  One of the most effective ways to become a PRP self-advocate is to join the PRP Facebook Support Group and/or the PRP Community on RareConnect and learn from others. Ask questions and offer comments. You will learn how other patients and caregivers have become self-advocates who enlighten their dermatologists about the challenges of PRP.

Your Action: Read the 11 reasons why PRP patients and caregivers join the PRP Facebook and RareConnect communities. Then participate.

PRP Worldwide Census Advocacy

The Cause: With an estimated prevalence rate of one in 400,000, PRP is an über-rare rare skin disease. In the US there are a little more than 800 “active” PRP patients and an indeterminate number of those in remission. The more we know about the global PRP community, the better we can advocate for more timely diagnoses, better access to affordable treatment options, and PRP research. To this end the PRP Worldwide Census seeks to reconfirm information already in the PRP Community Database as well as filling in the information that is missing.

Your Action:  Learn more about sharing your journey

PRP Research Advocacy

The Cause: PRP research can take different paths. The GENETIC path took researchers in Tel Aviv and at TJU to the CARD14 mutation. The CLINICAL path involved the PRP Alliance and the recruitment of over 100 participants in research that expanded our understanding of the diagnosis and treatment of PRP. Today, the PRP Alliance is support the Yale University School of Medicine in the building of a PRP Patient Registry, a Burden of Skin Disease study, and genetic research.

Your Action: Learn about research at Yale University School of Medicine and Thomas Jefferson University and participate.

Rare Disease Advocacy

The Cause: In May 2015, the PRP Alliance incorporated as a nonprofit organization and was designated a 501(c)(3) tax-exempt organization, a prerequisite for membership in the the National Organization of Rare Disorders. Once our membership was approved in September 2015 it took us two years to be invited to coordinate the revision of the NORD PRP Report.  The previous PRP Report (circa 2007) was approximately 1,000 words in length — the revision was more than 5,000 words. In October 2017, the PRP Alliance participated in the Orphan Drug and Products Breakthrough Summit and supports NRD advocacy efforts whenever possible.

Your Action:  Learn about NORD.

Rare Skin Disease Advocacy

The Cause: The PRP Alliance, the driving force behind the Rare Skin Disease Referral Initiative, addresses the needs of patients diagnosed with one of 597 rare skin diseases. We want dermatologists who teat ANY rare skin disease to automatically refer their patients to the Genetic and Rare Diseases Information Center where we have assisted in the revision of the GARD PRP Report.The PRP Alliance will attend Rare Disease Week on Capitol Hill (February 26-March 2, 2018) sponsored by the Rare Disease Legislative Advocates and the EveryLife Foundation.

Your Action:  Learn about RDLA and EveryLife Foundation.

Skin Disease Advocacy

The Cause: As a member of the Coalition of Skin Diseases since August 2015, the PRP Alliance has participated at the American Academy of Dermatology Association’s annual Legislative Conference in Washington, D.C. (2015-2017). For the third year, the PRP Alliance will attend the 75th annual meeting of the AAD to be held San Diego, CA (February, 2018). The PRP Alliance has attended AAD annual meetings in 2014 (Denver, CO), 2015 (San Francisco, CA) and 2017 (Orlando, FL).

Your Action:  Learn about the AAD and AADA,

Dermatology Patient Organization Advocacy

The Cause: As a member of the International Alliance of Dermatology Patient Organizations, the PRP Alliance supports the shared objectives of an ever-increasing number of patient organizations. While we all have had to deal with the “short end of the stick”, many patient organizations have discovered that they can band together to create a stick that has no short end. As rare disease advocates say: “Lane we are rare, Together we are strong.”

Your Action:  Learn about IADPO.