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PRP Awareness Advocacy Challenge

PRP Petition Project: Planning

While the PRP global community lacks the political clout and financial resources of patient organizations supporting more common skin disorders like the National Psoriasis Foundation. However, we have attended international conferences, participated in workgroups,  and found ways to make our presence known. We need to sharpen our focus on ways to educate dermatologists. 

Why a petition?

A petition is a formal request for action. It answers the question: WHO do we want to do WHAT?

  1. The WHO is easy — Dermatologists
  2. The WHAT is easy, too. In general, we want dermatologists to be aware that among the 3,000 skin disorders plaguing the world, 591 are considered rare skin diseases and too often ill-served.
  3. And as long as we have their attention, be aware of PRP in particular.
What is our Call to Action

A petition is a catalyst for action. What do we want dermatologists to do?

  1. Be aware of the Genetic and Rare Disease (GARD) Information Center, a program of the National Institutes of Health.
  2. Routinely refer patients diagnosed with one of 591 rare skin diseases to GARD.
  3. Specifically, refer patients diagnosed with PRP to the PRP Alliance.
Who do we petition?

We must carefully pick our battles and sharpen our focus. To this end we have targeted the “Movers & Shakers” who need to know what we know.

Dermatology Departments at Teaching hospitals

    1. NOTE: U.S. and Canada contact list from 2020 must be updated.
    2. Expand contact list to include Department Chair, Residency Program Director, and Residency Program Coordinator

American Academy of Dermatology (AAD)

    1. https://aad.org
    2. Founded in 1938, the AAD is the largest, most influential, and most representative of all dermatologic associations. With a membership of more than 20,000 physicians worldwide, the AAD is committed to: advancing the diagnosis and treatment of the skin, hair and nails; advocating high standards in clinical practice, education, and research in dermatology; and supporting and enhancing patient care for a lifetime of healthier skin, hair and nails. 
    3. NOTE: Email (09/28/2021) sent to Tina Mitillano, Member Services. Confirmed 151 directors of residency training programs and 1,730 names on the All-Residents list. Total Cost: $420. Mailing to 16,896 AAD members would cost $3,570. Considering that 19 out of 20 dermatologists will have a PRP patient, this is not a focused option.

International League of Dermatological Societies (ILDS)

    1. Over 180 member societies from more than 80 countries representing 200,000+ dermatologists.
    2. https://ilds.org
    3. Work through the International Alliance of Dermatological Patient Organizations

European Academy of Dermatology and Venereology.

    1. 7,000-plus members
    2. https://www.eadv.org
    3. Work through the International Alliance of Dermatological Patient Organizations
What is the Call to Drafting the Petition

Five (5) PRP patients will be enlisted to help draft the Rare Skin Disorder Referral Initiative Petition. The invitation will be announced as a post to the PRP Facebook Support Group.