Rare Skin Disease Referral Initiative Outreach

From the Editor…

With the publication of my article in September issue of The Dermatologist (Rare Disease Patients A Need Roadmap), the PRP Community can now begin the outreach campaign that has been nearly a year in the making.

Here’s the plan and how YOU can help.

  An effort will be made to reach out to the 1,706 PRP patients / caregivers in the PRP Community Database. We want teach to contact their own dermatologist or dermatology team.

 An effort to share the Rare Skin Disease Referral Initiative via Facebook by the 1,363 members of the PRP Facebook Support Group.

The rest of the outreach plan falls on my shoulders.

❉  In addition to the chairs of the dermatology departments at 88 teaching hospitals in the U.S., we will reach out to faculty leadership, the chief resident and a few clinicians.

❉  Send press releases to dermatology-related publications, e.g., Dermatology News, Dermatology Times, Practical Dermatology, etc.The Rare Skin Disease Referral Initiative is NEWS and the article in The Dermatologist gives us the credibility with the media. I already have the contact information.

❉  
Send press releases to the pharmaceutical companies marketing treatments used by PRP patients, e.g., Stelara, Cosentyx, Humira, Enbrel, etc. I already have the contact information.

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

 Press release to the Genetic and Rare Disease (GARD) Information Center, GARD has vast resources for advocacy efforts.

 Press releases to the organizations representing the 597 rare skin diseases listed in the GARD database. That contact list must be built.

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

❉  Press releases to International Dermatology organizations, e.g., DermNet New Zealand, British Association of Dermatologists, European Academy of Dermatology and Venereology, etc.

I’m not kidding about “Immediate Action”. The Outreach Campaign I have outlined needs to begin today. Right now is when you can help. 

 Confirm the name of your dermatologist and contact information. Go to: DERM CONFIRM

  Funding. 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