Welcome to the ReadyTalk Meet & Greet Scheduler. The PRP Alliance has arranged for a 14-day Free Trial of ReadyTalk, a video conferencing platform similar to GoToMeeting but more user friendly. The plan is to facilitate online gatherings where PRP patients and caregivers can meet, greet and chat. Based on the response, we ill schedule additional PRP ReadyTalks in December. The objective is to evaluate ReadyTalk as an ongoing communication tool for the PRP Community during 2018. If you would like to host a ReadyTalk Meet & Greet, simply follow the three steps below. Each two-hour ReadyTalk Meet & Greet will be supported by a fellow PRP patient or caregiver.
Step 1: Select a day
Step 2: Select a time for YOUR ReadyTalk Meet & Greet. Use the Time Zone Converter to confirm YOUR TIME versus DALLAS, TX time. All times listed below are Central Time (Dallas, TX)
Step 3: Send an email to bill.mccue@prpAlliance.org and include:
✽ Your name, e.g., Bill McCue
✽ Title, e.g., Welcome to PRP ReadyTalk
✽ Date: December 2, 2017
✽ Time: Saturday: 8 AM to 10 AM
PRP Ready Talk Schedule
SATURDAY, DECEMBER 25
✔︎ 8 AM – 10 AM: Bill McCue — Welcome to PRP ReadyTalk
✔︎ 4 PM -6 PM: Bill McCue — Welcome to PRP ReadyTalk
It was Thursday, October 1, 2015 when I posted the 24th and final issue of On the Road… on the PRP Alliance website. After writing 598 pages of “PRP stuff” I was ready to shift my focus to the PRP Survival Guide. No more self-imposed, end-of-the-month deadlines for me. Besides, I was in remission.
It has been over two years and I am still in remission — but eager to publish a newsletter for the PRP community.
I urge every PRP patient and caregiver who subscribes to On the Road… to take the time to read what we publish and share your personal insights. PRP patients and caregivers live with PRP day in and day out. You are the subject matter expert for your version of PRP. We need to tell all our stories.
Bill McCue, Editor
November 1, 2017
Every patient organization needs an Awareness Day they can call their own. We celebrate Rare Disease Day on the last day of February and share the spotlight with 7,000 other rare diseases. However, PRP Awareness Month gives us 30 days to crow like a banty rooster, shake our tail feathers and get more than our fair share of attention. — Bill McCue
My first PRP Awareness Day was November 28, 2012 and quite “unofficial” by any standards. It began with a phone call from my dermatologist’s office. I was told that the red spot on my forehead on August 8 — nearly four months prior — had been the onset of pityriasis rubra pilaris. Like most PRP “newbies”, I spent the next few days searching the internet and learning what little there was to learn about PRP. What I found was redundant, insufficient, outdated, and typically written for an audience of healthcare professionals.
On November 1, 2013, I celebrated PRP Awareness Day once again. This time I sent out over 1,500 emails to PRP patients and caregivers and called the effort the PRP Worldwide Census. It had taken me several months during the previous summer to review over 29,000 emails in the PRP Support Group Archive going back to November, 1997. As I collected email addresses I also harvested “core” information about the onset, diagnosis, and treatment of PRP. It took six months to solicit 500 responses. That was the genesis of the PRP Community Database.
November 6, 2014 was the first “official” observance of PRP Awareness Day. The date was selected to commemorate the signing of the Rare Diseases Act of 2002 that set the threshold for a rare disease. A rare disease or disorder is defined in the U.S. as one affecting fewer than 200,000 Americans. Using the European standard, however, the U.S. threshold would be only 160,000. Today there are more than 7,000 known rare diseases, and it is estimated that about 30 million Americans are affected by them.
November 6-8, 2015 was the first “official” observance of PRP Awareness Weekend since the 6th fell on a Friday. The “Big Event” would be a global Meet & Greet. Whether face to face or using technology (FaceTime, Skype and ooVoo) we pitched the idea to the PRP Facebook Support Group. Other than a few face-to-face Meet & Greets and a spike in Facetime encounters, the effort missed it’s mark. Lesson learned.
November 1-30, 2016 was the first “official” observance of PRP Awareness Month. Perhaps all we needed was 30 days rather than a weekend or a day. Sunday, November 6th was selected to host a 24-hour GoToMeeting gathering. Only the predictable and dependable cadre of seasoned PRP travelers stopped by to chat.
An important lesson has been learned over the past five years. If you run the same flag up the flagpole, the same people are going to salute. We’re going to try something different.
✔︎ Revive the PRP Community newsletter
✔︎ Launch the PRP Worldwide Census
✔︎ Execute the Rare Skin Disease Referral Initiative
✔︎ Initiate PRP Surveys
✔︎ Recruit participants for PRP research
✔︎ Promote legislative advocacy
✔︎ Support the PRP Alliance.
PRP Awareness Month Begins Today: OTR025.1
From the Editors: The PRP Community Database currently tracks 1,622 PRP patients who are now members of the PRP Facebook and/or RareConnect Communities, or are unaligned but have a valid email address. The 2017 PRP Worldwide Census begins today with a simple goal: confirm the data we have and add data we are missing.
If you are a PRP patient or caregiver, you have something we need.
✽ We can’t force you to give it to us.
✽ We don’t have the funds to buy it from you.
✽ And we would never try to steal it from you.
All we can do is ask you to share and hope you say “Yes”.
Sharing data: Are you a skeptic?
Most PRP patients/caregivers appreciate the importance of sharing data to help PRP researchers better understand pityriasis rubra pilaris. Because your information is personal and private, it is important that we safeguard any data you share. We hope that our data collection methodology encourages your enthusiastic participation in the upcoming PRP Worldwide Census.
Confidential Data — While the PRP Alliance is not required to comply with federal regulations regarding the security of protected health information (HIPAA Security Rule), the PRP Community Database is in full compliance. The data we collect about your PRP journey and the data for other PRP patients (active and in remission) is both encrypted and password protected. Moreover, the data cannot be accessed via the Internet.
De-identified Data — When shared with PRP researchers or published on the PRP Survival Guide website, your data is de-identified. Simply stated, the PRP Community Database reports numbers, not names. When your PRP-related data is published or shared, that data is disassociated with your name. There is complete and total anonymity.
The Value of Data in the Aggregate — Our PRP-related data has the greatest value when combined with the data of others. It is the aggregation of data that will ultimately enlighten PRP researchers.
Sharing of Data — The PRP community will be notified when information contained in the PRP Community Database is shared with PRP researchers, e.g., Thomas Jefferson University, Yale University School of Medicine, etc. Such notification will include the reason why the de-identified data is being shared.
What is “Core” data?
The following datapoints represents core data. With this information we can build a profile of the worldwide PRP community.
✽ Elapsed time between onset and diagnosis
✽ Elapsed time between onset and remission
✽ Onset age by decade of life
✽ Biopsies as a diagnostic tool
✽ Survey PRP patients in remission
✽ Survey PRP children based n onset age
Name: Bill McCue
Even though we ask for the FIRST NAME and LAST NAME, we NEVER publish NAMES. WE ONLY report NUMBERS, e.g., How many “this” and how many “that”.
Location: Plano, TX
We are NOT looking for street addresses or ZIP Codes/Postal Codes)
The email address is the only way we can verify that the information we receive is from a valid source. We will send a confirming email to the email address of the person completing the PRP Census. If the email confirmation is undeliverable, the data will not be added to the database.
Onset Age: 66 years, 2 months
At what age did your PRP symptoms first appear?
Onset Date: August 8, 2012
What was the approximate date when your PRP symptoms first appeared? Because few people know the exact date Onset Date, only month and year is required, Do the best you can, e.g., August 8, 2012; August 2012, or even the “Summer of 2012”.
Misdiagnosis: seborrheic dermatitis
What misdiagnoses preceded your “official” PRP diagnosis? We are only concerned with the misdiagnoses of your dermatologist, not your GP. Options include psoriasis, eczema, seborrheic dermatitis, allergic reaction and other (specify)
Biopsy History: 3 biopsies inconclusive. 4th biopsy supported PRP
What role did biopsies play in your diagnosis of PRP?
Diagnosis Date: November 28, 2012
The Diagnosis Date should be as accurate as possible, e.g., November 28, 2012, November, 2012; end of November, 2012. Do the best you can.
Current Status: In remission since April 4, 2012
Don’t worry about definitions. Given the choice between “Active” and “In Remission”, what is your current status? If “in remission”, what is your date of remission
Treatment Options (oral/injection): acitretin
All we want to know are the PRP-related drugs you were prescribed from the list retinoids, immunosuppressants and biologicals. Whether or not the drugs were successful will be the subject of a future survey. We are NOT collecting data on itch and pain relief, topical ointments, creams and lotions, sleep aids, etc.
We are a global community. Each country has their own way of protecting a patient’s medical information. For purposes of the PRP Census, we comply with U.S. HIPAA regulations. Even with assurances of confidentiality, data collection has never been an easy task.
Confidential Data – The data we collect about your unique PRP journey – and the data for all PRP patients (active and in remission) – is encrypted, password-protected, and not connected to the Internet.
If you have any questions, Leave a Reply below. If not, your PRP Worldwide Census awaits.
1,621 Invited to Share PRP "Core" Data: OTR025.2
I have been collecting PRP-related information from PRP patients and their caregivers since November, 2013. In the beginning it could take six requests before I received a completed PRP census form.
On the 1st and 15th of ever month the NUMBERS will be posted here. The list will show the November 1, 2017 numbers and the most current numbers.
The numbers below are based on the “core data” shared by PRP patients and caregivers worldwide. The PRP Community Database is the most complete representation of our patient population. Thank you for sharing your information.
Bill McCue, Founder/President
PRP Alliance, Inc.
Recap as of November 1, 2017
Numbers in parentheses ( ) indicate “not providing data”
✽ Total number of PRP patients reporting: 1,629
✽ Reporting email addresses: 1,033 (596)
✽ Reporting location: 1,140 (489)
✽ Reporting onset date: 715 (914)
✽ Reporting onset age: 651 (978)
✽ Reporting diagnosis date: 694 (935)
✽ Reporting current status: 656 (973)
✽ Active: 394
✽ Remission: 262
✽ Remission date: 64 (198)
✽ Reporting standard drug therapies: 67 (1,562)
Let’s start with a little history.
When James Shooter was admitted to St. Bartholomew’s Hospital in London, England in 1828, he unwittingly became the world’s first recorded patient with what the medical community would eventually call pityriasis rubra pilaris.
Fast forward 169 years. The PRP community has only been around since late 1997 when a group of PRP patients and caregivers traded emails on AOL. It was Jean-Luc Deslauriers, a Canadian from New Brunswick, who got the ball rolling. Our own Tierney Ratti and Ginny Maxwell’s mother were there when the PRP Support Group was established. For 16 years PRP patients and caregivers traded an average of 150 emails each month. It was the only game in town for a while until technology caught up.
In June 2008, Jonah Grant-Scarfe, another Canadian, founded the PRP Facebook Support Group. In September 2013 it transitioned from a Public Forum into a Closed Group with about 100 members. By year’s end Tierney was the Administrator and the rest is history, Today the PRP Facebook community is nearing 1,100 members and growing. Each month a hundred discussions are started with thousands of comments and replies. The PRP Facebook community has earned the moniker: “The Land of Chat”.
That’s an easy question to answer. It takes money to do the things we want to do. Are the projects and activities worth the effort — worth your donation? That’s a decision we want you to consider. Here’s how we intend to use your donation.
#1 — 2017 PRP WORLDWIDE CENSUS
The first PRP Worldwide Census kicked off on November 1, 2013 with emails being sent to over 1,500 PRP members of the PRP Support Group. Unfortunately, within 24 hours, more than 500 email addresses were purged as “undelverable”. By the end of May, however the PRP Community Database had updated records for over 1,000 PRP patients.
As of November 17, 2017, the PRP Community Database currently tracks 1,627 PRP patients of which 1,002 (62%) are members of the PRP Facebook Support Group. The challenge we face is finding the missing data.
✽ Missing locations: 468 (29%)
✽ Missing onset dates: 868 (54%)
✽ Missing onset ages: 933 (58%)
✽ Missing diagnosis dates: 889 (55%)
✽ Missing current status: 927 (57%)
We can do a better job. The focus of the 2017 PRP Worldwide Census is to fill in the data gaps for all the datapoints including:
✽ Onset date
✽ Onset age
✽ Biopsy history
✽ Diagnosis date
✽ Treatment (oral or injection — from a list of drugs)
✽ Dermatologist of record
✽ Current Status (active/remission)
The PRP Alliance will use the donations we receive to support the 2017 PRP Worldwide Census.
#2 — DIAGNOSING PRP
During the summer of 2013, a total of 487 PRP patients/caregivers were polled by email and given an opportunity to participate in a first-ever PRP Biopsy Poll. The primary objective of the PRP Biopsy Poll was to better understand the role played by biopsies in the diagnosis of pityriasis rubra pilaris from the PRP patient perspective. There were only two questions:
✽ How many biopsies have you had that supported a PRP diagnosis?
✽ How many biopsies have you had that failed to confirm PRP?
Within a three-week period a total of 256 PRP patients/caregivers responded with the following results:
✽ Diagnoses made strictly on the basis of clinical observations — no biopsies were ordered: 7.8%
✽ The results of the biopsy provided sufficient information to support a diagnosis: 45.3%
✽ Non- conclusive biopsies were ignored when the clinical observations were “consistent” with a PRP diagnosis: 23.4%
✽ PRP diagnosis made without the benefit of a confirming biopsy: 23.4%
✽ The PRP Biopsy Poll also suggests that when a dermatologist instructs a pathologist to consider PRP, the results nearly always confirm PRP.
It is time to revisit the issue of biopsies and the timely diagnosis of PRP. Your donation will support the 2017 PRP Biopsy Survey.
#3 — TREATING PRP
When a patient is diagnosed with PRP, the dermatologist typical prescribes medications but rarely refers the patient to the PRP Alliance, PRP Facebook Support Group, the PRP Community on RareConnect or to the PRP Survival Guide. Instead, the PRP patient is referred to Dr. Google, Dr. Yahoo or Dr. Bing to find answers and support on their own. On November 1, the PRP Alliance will begin a year-long campaign to change that practice. The PRP Dermatology Referral Initiative will advocate that patients diagnosed with PRP — or any rare skin disorder — be referred to the following websites:
The PRP Alliance has the support of both organizations in this effort.
PRP Treatment Efficacy Survey
The PRP community has an opportunity to collect information that could whet the appetite of PRP researchers. We hear the mantra every day: What works for one doesn’t work for all. But let’s quantify what works and what doesn’t, e.g., acitretin, methotrexate, Stelara, Cosentyx, Humira, Remicade, Otezla, Taltz, etc. The PRP Worldwide Census will identify drugs that have been prescribed, the PRP Treatment Efficacy Survey will collect information on what worked and what didn’t.
Your donation will support both the Dermatology Referral Initiative and the PRP Treatment Efficacy Survey.
#4 — RESEARCHING PRP
Prior to 2012 the PRP community had lamented the lack of PRP research. In October 2012, researchers at Thomas Jefferson University began genetic research with 50 participants. Their focus was on the genetic mutation of CARD14. During the summer of 2015, Dr. Jouni Uitto, Chair of the Department of Dermatology and Cutaneous Biology expanded that research. The PRP community provided 105 participants and TJU published their finding in 2016. Today both genetic and clinical research continues in Philadelphia.
The PRP community has been officially invited to participate in three major PRP research projects underway at Yale University School of Medicine. The funding for this research comes from the National Institutes of Health and the Foundation of Ichthyosis and Related Skin Types (FIRST). We are one of the “Related Skin Types”,
✽ Genetic research where PRP is hereditary, e.g., familial PRP
✽ PRP Patient Registry
✽ PRP Burden of Skin Disease research
Your donation will support the efforts of the PRP Alliance to recruit participants in PRP research at TJU and Yale
#5 — BUILDING PRP AWARENESS
The PRP community newsletter was published during the period April, 2014 to October, 2015. A total of 24 issues (598 pages) of PRP-related information was shared. The newsletter was suspended when the focus shifted to the PRP Survival Guide. It’s time to bring back the newsletter. It’s time to revive: On the Road… Our Journey from Onset through Remission .
The newsletter will mirror the organization of the PRP Survival Guide.
✽ Chapter 1 — The Basics
✽ Chapter 2 — Diagnosing PRP
✽ Chapter 3 — Treating PRP
✽ Chapter 4 — Daily Life
✽ Chapter 5 — PRP Parents and Kids
✽ Chapter 6 — Remission
✽ Chapter 7 — PRP Research
✽ Chapter 8 — PRP Advocacy
Your donation will underwrite the email distribution of On the Road… to the PRP community worldwide.
If you’ve been wondering how to help or if you’ve been wishing you could do something more, we welcome your tax deductible contribution.
If you needed some “specifics” to justify a donation, we hope that the information we provided here was enough.
The PRP Alliance is a 501(c)(3) tax-exempt nonprofit corporation. Our Employer Identification Number is 47-3868578. We will make sure that your donation receives a proper receipt for your tax records.
Click Here to donate to the PRP Alliance.
The PRP (Pityriasis Rubra Pilaris) Alliance is a 501(c)(3), nonprofit, patient advocacy organization.Our mission is to advocate for the timely and accurate diagnosis of pityriasis rubra pilaris (PRP), the implementation of more effective and accessible treatment options, and an increase in PRP-specific research. Advocacy contacts:
Bill McCue, Founder/President
Telephone: (214) 205-0574
Ginny Maxwell, Director, Patient Advocacy
The PRP Survival Guide is an online repository of patient-reported experiences as reported by the PRP community. It is offered as an alternative to unstructured and random searches by newly diagnosed PRP patients using Dr. Google, Dr. Yahoo and Dr. Bing. These efforts will almost always lead to frustration and frequently to misinformation.
If we do are job properly, you will either (1) find the answers you seek or (2) send the PRP Survival Guide editor out in search of answers to questions we haven’t asked. Eight chapters provide an organizational framework for PRP patients and caregivers:
✽ Diagnosing PRP
✽ Treating PRP
✽ Daily Life
✽ PRP Parents and Children
✽ PRP & Remission
✽ PRP Research
✽ PRP Advocacy
Founded in April 2013, the membership in this Closed Group has grown steadily to nearly 1,100 with representation on every continent. Truely the “Land of Chat”, post a question and comments flood in. Need a hug, the huggers respond. Need a friend … there’s a community of fellow travelers ready to lend an ear or a shoulder. Need information … there are nearly 1,100 members who can share what works and what doesn’t for their unique version of PRP. We learn together. We are in this together.
The PRP Alliance supports RareConnect, an initiative of EURORDIS, the international equivalent of the National Organization of Rare Disorders. Established in April 2015, the PRP Community on RareConnect is a 200+ member, multi-language, non-Facebook option serving adults with PRP and the parents of children diagnosed with juvenile onset.
RareConnect provides a “safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. RareConnect partners with the world’s leading rare disease patient groups to offer global online communities allowing people to connect around issues which affect them while living with a rare disease.”
The Genetic and Rare Diseases (GARD) Information Center is a program of the National Center for Advancing Translational Sciences (NCATS) and funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI). GARD provides the public with access to current, reliable, and easy to understand information about rare or genetic diseases in English or Spanish.
The PRP Community advocated that all patients diagnosed with PRP should be routinly referred to GARD’s PRP Repost rather than Dr. Google, Dr. Yahoo and Dr. Bing.
The National Organization of Rare Disorders maintains a Rare Disease Database to provide brief introductions to more than 1,200 rare diseases — including pityriasis rubra pilaris. These rare disease reports are primarily geared toward patients and families. There is also, however, an important secondary audience, e.g., physicians, researchers, nurses, students, journalists and others who might request and benefit from such rare disease information.
The PRP Report (circa 2017) has recently replaced the 2007 version.
From the Editor…
The light has finally been turned on.
As of September 20, the National Organization of Rare Disorders (NORD) has replaced the 2007 PRP Report with the 2017 revision. We now have a beacon of hope for PRP patients and caregivers to find as they travel the uncharted waters of pityriasis rubra pilaris.
Here are some not-so-random observations:
(1) Total word count increased by 4,010 — from to 1,274 to 5,284.
(2) One of the NORD guidelines for their rare disease reports is that they be written for the 8th grade level. We did one better. We gave one of Ginny Maxwell’s twin boys, a 7th Grader with atypical juvenile onset PRP, an opportunity to read the revision. Joey gave it a “thumbs up”.
(3) The FIRST DRAFT was made available to the PRP community via the PRP Facebook Support Group. I considered this to be my “Peer Review” by fellow PRP patients and caregivers. Comments and corrections were made as appropriate.
(4) The SECOND DRAFT was made available to dermatologists via their PRP patients. While the overall response was disappointing, the comments and corrections were incorporated as appropriate.
(5) An updated SECOND DRAFT was provided to what you might call an “Unofficial” Editorial Advisory Council. We got great response from:
✽ Mark Lebwolh, MD, Chairman, Dermatology Department, Icahn Medical School, Mount Sinai Hospital, New York, NY;
✽ Jouni Uitto, MD, PhD Professor and Chair, Department of Dermatology and Cutaneous Biology, Thomas Jefferson University, Philadelphia, PA;
✽ Nicholas Ross, MD, Lead Investigator and Resident Physician, Department of Dermatology and Cutaneous Biology of Thomas Jefferson University, Philadelphia, PA;
✽ Teri Greiling, MD, PhD, Assistant Professor of Dermatology, Oregon Health & Sciences University, Portland, OR;
✽ Kelsey Brown, Medical Writing Specialist, UCB BioSciences, Inc., Raleigh, NC; and
✽ Jan Tennant, PRP patient, former Information Analyst, Pfizer, Inc., Ringwood, NJ
(6) The FINAL DRAFT was sent to Marsha Lanes, Medical Editor for NORD Rare Disease Database. It was accepted and approved by NORD with minor formatting changes.
When a newly diagnosed PRP patient or caregiver — or even a dermatologist or other healthcare professional — looks up “pityriasis rubra pilaris”, they will find the NORD PRP Report (circa 2017) in the Top 5 and the PRP Alliance referenced in 5 of the top 10 results, e.g., (#1 of 10) DermNet New Zealand, (#2 of 10) Medscape, (#3 of 10) National Organization of Rare Disorders, (#4 of 10) Genetic and Rare Diseases Information Center, (9) British Association of Dermatologists.
It has taken four years to build the lighthouse and two months to turn on the brightest light we could fine. Thanks to everyone who has supported this effort.
Next on the agenda: An eBook for PRP patients, caregivers and healthcare professionals— the logical next step for the PRP Survival Guide.
NORD PRP Report Revised