PRP Parent Coalition Forming

From the Editor…

The creation of the PRP Parent Coalition has been had several false starts in the past four years. It’s time to try again.

Let’s start with a quick overview of the PRP community with a focus on Juvenile Onset, parents and children. The following “numbers” were gathered on June 14, 2017.

✽  Total PRP patients in database: 1,509
➤  Adult Onset: 551 (36%)
➤  Juvenile Onset: 149 (10%)
➤  Decline to state: 819 (54%)

✽  Total PRP Juvenile Onset patients in database: 149
➤  Reachable via email: 129 (87%)
➤  Reachable via PRP Facebook: 20 (13%)

✽  Total PRP Juvenile Onset patients in database: 149
➤  Location 109 (73%)
➤  Reachable via PRP Facebook: 40 (27%)

✽  Total PRP Juvenile Onset patients in database: 149
➤  Location 120 (80.5%)
➤  Reachable via PRP Facebook: 29 (27%)

THE PLAN — FIRST STEPS

STEP ONE
Take a closer look at the 149 PRP Juvenile Onset patients already in the PRP Community Database. Some will be adults who may have valuable insights to share. Confirm email addresses and reconfirm the PRP Profile of each.

✽  Onset date
✽  Onset age
✽  Misdiagnoses
✽  Diagnosis date
➤  Classical
➤  Atypical
➤  Circumscribed
✽  Current status

STEP TWO
Reach out to the 819 PRP patients/caregivers in the PRP Community Database who have not provided enough information to confirm Juvenile Onset.

✽  Onset date
✽  Onset age

STEP THREE
Conduct a survey to determine the needs of the PRP Parent Community.

STEP FOUR
Report the results of the 2017 PRP Parent Survey with recommendations.

STEP FIVE
Form a PRP Parent Council — open to all parents — to determine an appropriate path forward to include articles in the PRP Survival Guide, webinars, research initiatives, etc.

Leave a Reply

Your email address will not be published.