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Every year I try to find a new way
to celebrate Rare Disease Day
My first Rare Disease Day commemoration was in February 2013. I was already six months into my own PRP journey and found myself inspired to register a domain name: prpAlliance.com and begin building the PRP Global Database. It would take me another nine months to actually launch the website, but that’s another story.
Rare Disease Day is an annual observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.A truly noble cause, indeed. This year I have committed to hosting a 12-hour global ZOOM-A-THON on February 28, 2021 for the PRP Global Community of patients and caregivers.
The following topics/events are on the schedule should one or more PRP patients/caregivers have an interest.
1. Global Meet & Greet
Since the PRP Global Database was created in February 2013, a total of 3,610 PRP patients have been identified. Unfortunately, 1,216 can no longer be tracked. They not members of the PRP Facebook Support Group and no longer have a valid email address. The 2,394 who remain represent the PRP Global Community. The largest face-to-face gathering of PRP patients and caregivers took place in early August 2019 when 20-plus PRP patients with their caregivers meet in Orlando and Tampa, Florida. The ZOOM-A-THON is a socially responsible alternative for all go us to get “up close and personal” with one another. You can either (a) “show up” at a time convenient to you or (b) coordinate with other kindred spirits from the Land of Chat.
2. Rare Skin Disease Day
The global pandemic isn’t going to stop our PRP global community from celebrating Rare Disease Day on February 28. With a prevalence of 1:400,000, pityriasis rubra pilaris is among the most rare of nearly 600 rare SKIN diseases. Using ZOOM we will Meet & Greet fellow PRP patients and caregivers from around the world during our 12-hour “Open House”.
3. Open Mike
The PRP ZOOM=A+THON is not a webinar. For 720 minutes the global PRP community has the opportunity to interact in real time with REAL people. On a recent ZOOM encounter a face appeared on my computer screen and I basically said, “Who the hell are you?” It turned out to be Linda Lagasse. We are so much more than names and stories. “Open Mike” simply means that we get to talk with one another. “Open Mike”is an opportunity to put a face and a voice with a name.
4. GRIDD
Global Reseasch on the Impact of Dermatological Diseases (GRIDD) is a five-phase project. Two GRIDD surveys are planned for 2021 with another two years (2022-2023) focused on xxxxx xxxxxxx xxx. The global PRP community made history as a RARE skin disease with a 3ed Place performance among 94 dermatological diseases, most with patient populations well above our one in 400,000.
❏ 267 — Psoriasis: 7.4 million (US patients)
❏ 230 — Atopic Dermatitis: 30 million (US patients)
❏ 197 — Pityriasis Rubra Pilaris: 820 (US patients) }
❏ 94 — Alopecia Areat: 6.8 million (US patients)
❏ 65 — Pemphigus Vulgaris: 62,000 (US patients)
If you have questions about GRIDD research, the follow-up to Survey $1 and plans for the next two years, now if the time to ask.
5. Onset to Diagnosis Survey
One goal of the upcoming ZOOM-A-THON is to inspire participation in the Onset to Diagnosis survey. The goal is to (a) reach the goal of 600 completed surveys and (b) celebrate the achievement and (c) discuss what we can do with the data we have harvested. As of Thursday, February 25, the total number of completed surveys has reached 529. .
6. The Endgame — the Next Survey
A diagnosis of PRP is life-altering. Even before I started treatment I wanted to know how long my PRP would last. Dr. Google and Dr. Yahoo reaffirmed that it would be three to five years. The objective of my PRP treatment plan s remission. Yet, neither PRP-savvy dermatologists nor the PRP global community of patients and their caregivers have an agreed upon a definition of remission. Does remission mean “no symptoms with no PRP meds? Or is it just “no PRP symptoms”. Or is it something else, entirely. We can easily calculate duration based on onset date and today’s date. But, how do we know when we are “in Remission” on just on the off ramp. This is a topic worthy of discussion.
7. PRP Parents & Kids
Every so often I lament the fact that after (or in spite of) six years of effort, I have been unable to create or inspire a community of PRP parents within the PRP Facebook Community. That hasn’t stopped me from raising the issue again in hopes that a Coalition of PRP Parents & Kids might evolve.There are currently 262 PRP patients with juvenile onset PRP. The ZOOM-A-THON is an opportunity for PRP parents and even the children (supervised by parents) to gather together for a gathering on Rare Disease Day. It’s time to talk kids.
