In the realm of the remarkable: I got a bad scrape on my forearm two days ago. It swelled up, got very red, and was like any other scrape. Today it is almost gone! Also, have I mentioned that all the age spots on my hands and face are gone?
Communicating with tju
Dear all, Due to institutional regulations, I will be using this account strictly for communicating periodic updates to a group. I am not permitted to “friend” or “accept” friend request. I will also not be using the chat feature. Please do not take this personally! 🙂
It would be best (for individual questions) to use the email address PRP@jefferson.edu. I typically get a chance to check this email every 24-48 hours. I hope to respond to basic questions within that time frame. Items related to study enrolment documentation can take longer due to scanning and other requirements.
If it is urgent, you may email my personal email Nicholas.Ross@jefferson.edu. Nevertheless, for record keeping purposes, it is best to always use the PRP@jefferson.edu address to centralize all your communications with our study group!
Before the diagnosis — State of Worry
I’m new here. On April 20th my dermatologist did biopsy and after 4 weeks said it is either chronic eczema or PRP. And he asked me to get an appointment at Brussels university hospital with a research doctor. I could get appointment only for 22 June. But in mean time, I read about PRP last week for first time and I became very sad and afraid.
Objective: To conduct a PRP Worldwide Census.
Problem to be addressed: The PRP Community Database currently tracks 1,584 PRP patients of which 651 (41%) are members of the PRP Facebook Support Group and 217 (14%) are members of the PRP Community on RareConnect. Unfortunately, the following information is currently missing.
✽ Missing email addresses: 557
✽ Missing locations: 468
✽ Missing onset dates: 868
✽ Missing onset ages: 933
✽ Missing diagnosis dates: 889
✽ Missing status: 927
Methodology: Use the technical resources of Constant Contact to solicit and protect information.
Financial Impact: The out-of-pocket costs associated wth the conduct of the 2018 PRP Worldwide Census are limited to a monthly prescription which provides for an unlimited number of surveys.
✽ Vendor: Constant Contact
✽ Subscription: $47.97 per month; $575.64 annual
✽ Reduction is the number of missing data points
✽ Increased membership in the PRP Facebook and RareConnect communities
✽ Identification of undeliverable email addresses.
✽ Creation of charts and tables
2018 PRP Worldwide Census
To resurrect the PRP community’s original newsletter. A total of 24 issues (598 pages) of On the Road … Our Journey from Onset through Remission were published during the period April 2014 through October 2015.
Problem to be addressed
The PRP Alliance does not “push” information to the PRP community. We depend on PRP patients and caregivers to reach out via the the PRP Facebook Support Group with questions (posts) and access the PRP Survival Guide and PRP RareConnect Community and on a need-to-know basis.
The reformatted online newsletter will present a synopsis/overview of articles with links labeled READ MORE or FULL STORY. Topics will include:
✽ Diagnosing PRP
✽ Treating PRP
✽ Daily Life
✽ PRP Parents and Children
✽ PRP and Remission
✽ PRP Research
✽ PRP Advocacy
The PRP Community will utilize Constant Contact to provide a weekly or bi-weekly update on issues related to the PRP.
Success will be measured by the following:
✽ Our ability to publish 26 or 52 issues during the period November 1, 2017 through October 31, 2018.
✽ Increased number of subscribers
PRP Newsletter Revival
Add Your Group
Are you involved with a skin-patient support group? Would you like your group to be part of the CSPA network and benefit from everything belonging offers? Large or small, every group that is not-for-profit and patient-focused is welcome. Joining is free!
Contact Diane Christin, Manager Stakeholder Relations at email@example.com or 1-613-864-0745 to discuss the benefits of having your organization join the Canadian Skin Patient Alliance, then fill out the form below to start the process.
Application for CSPA Affiliation or as a CSPA Global Collaborator
If your group would like to join the CSPA as an affiliate, please read the requirements section below, then fill in the fields and submit the form. If you are interested in joining as a global affiliate please read the requirments and then submit this form. We will get back to you as soon as possible. If you have any questions please feel free to contact us.
A CSPA affiliate member is a federally or provincially incorporated not-for-profit organization or registered charity that exists to help Canadians deal with a skin condition(s) and/or disease(s) by providing support, education, information, and/or undertaking or supporting fundraising, research and/or advocacy on their behalf that has been accepted by the Board of the CSPA upon recommendation by the CSPA Affiliates Committee for membership.
As a matter of policy, which is designed to maintain the CSPA’s good standing in the community, the CSPA invites only organizations who share its vision and its approach to carrying on its affairs. Of particular importance to the CSPA and its stakeholders are the following:
- Patient-focused programming and initiatives
- Fiscal responsibility/transparency
- Unbiased neutrality with respect to recommendations for treatments for diseases (No direct advertising for sponsors’ products in any materials or websites.)
- A functioning governance model with structured clinical advice from a relevant health-care professional or team
- The organization cannot be solely funded by a single commercial entity
Please fill in the following information for review by the Affiliate Committee for acceptance as a CSPA affiliated organization:
Application for CSPA Affiliation
From the Editor…
On July 17, 2017, the PRP Facebook Community was given an opportunity to identify PRP-savvy dermatologists to participate in a PRP Community research project. The goal was to identify at least 10 PRP patients/caregivers who have a WORKING relationship with their dermatologists. By WORKING relationship we meant that the PRP patient/caregivercould ask their dermatologist to read something about PRP and then tell you if it is accurate or not. And if something is incorrect, offer a better answer.
What will they be reading? The draft of the 2017 revision of the PRP Report maintained by the National Organization of Rare Disorders in their Rare Disease Database. The current NORD PRP Report was last reviewed in 2007 and is in need of updating.
A total of 11 dermatologists have been nominated: six from the U.S. and one each from Canada, Switzerland, Spain, The Netherlands and the UK.