We need your help.

It took 3 days and 16 people to raise $1,225, enough to pay for the Rare Skin Disease Referral Initiative’s  initial mailing of “advocacy packets” to 88 teaching hospitals in the U.S. Bravo to all.

The PRP Alliance needs another group of PRP patients and caregivers to step up for the most important project of 2018: paying for vital technology that will help us further our goals. This technology is provided by Constant Contact, which charges the PRP Alliance $74.62 each month. Our immediate fundraising goal is $895.44.

The PRP Worldwide Census began on November 1, 2017. We have already spread the word to 1,610 adults and children within the PRP community

❋  PRP Facebook Support Group: 1,099 members
❋  PRP Community on RareConnect: 233 members
❋  PRP Community Newsletter Email List: 1,047

 As a result, we were able to confirm “core data” for 63 people diagnosed with PRP including, e.g., name, location, onset date, onset age, misdiagnoses, biopsy history, diagnosis date and current status (active vs. remission).

To some the response may be disappointing. Four years ago when the first PRP Worldwide Census was launched on November 1, 2013, it took over six months to confirm “core data” for 500 PRP patients. Based on that experience, the  current effort is scheduled to continue through October 31, 2018.

Our year-long effort will be made possible using the technology provided by  Constant Contact that includes:

❋  Platform to produce the monthly newsletter
❋  Mailing list management (over 1,000 email addresses)
❋  Management of the PRP Worldwide Census responses

Click Here to donate to the
2017-18 PRP Worldwide Census effort

Yale University Commits to PRP Patient Registry

From the Editor…

With the support of the National Institutes of Health and the Foundation for Ichthyosis & Related Skin Types (FIRST), Yale University School of Medicine is building the first Patient Registry for ichthyosis and related skin types. A patient registry is the cornerstone of research. Investigators researching PRP, for example, will have access to the patient data they need to experiment, discover, and achieve medical breakthroughs. Without patient registries, the process of scientific discovery in medical treatments can be slowed, halted, or even dismissed.

The PRP community has been given the opportunity to participate in the building of a PRP Patient Registry. The PRP Alliance supports this effort and encourages every PRP patient to participate.


Step One — Decide to Participate

Ted Zaki is the go-to person for the PRP Patient Registry. A senior medical student at the Yale School of Medicine, Ted  is currently working as a research fellow in the laboratory of Dr. Keith Choate, director of research of the Yale Medicine Department of Dermatology.   Besides maintaining the National Registry for Ichthyosis and Related Skin Types (including PRP) run by the Foundation for Ichthyosis and Related Skin Types (FIRST), Ted is interested in studying quality of life in patients with various skin conditions, particularly PRP.

All you need to know about Patient Registries is available on the FIRST website. Check out Frequently Asked Questions.

If you are interested in sharing your experience living with PRP, please email Ted addressing the questions below for enrollment in the National Registry for Ichthyosis and Related Skin Types. Remember, PRP is one of the “related skin types”. Once enrolled, you will be invited to participate in the the Department of Dermatology’s ongoing quality of life project.

Step Two — Answer Yale’s Five Questions

  How old were you when you first noticed PRP symptoms?
   Where on your body did the symptoms first appear?
   Does anyone else in your family have PRP?
   Have you ever had a biopsy done? If so, did it support the diagnosis of PRP? If you have access to the biopsy report, please send a copy.
   Have you ever had genetic testing done? If you have access to the report, please send a copy

Step Three — Send photos

Please send photos of your skin — whatever you are comfortable sharing. preferably of your PRP during a flare. Your photos will be reviewed by Dr. Choate and he will determine your eligibility for inclusion in the PRP Patient Registry. (See Sample)

Sample PRP Patient Registry Application

I wanted to make sure that Ted and Dr. Choate knew that I was a card-carrying PRP patient. I wanted to be included in the Yale University’s PRP Patient Registry.

✽  Name: William McCue
✽  DOB: 05/20/46
✽  Current age: 71
✽  Gender: Male
✽  PRP Onset Date: August 8, 2012
✽  PRP Onset Age: 66
✽  PRP Onset Symptom(s): dime-size red spot on right temple
✽  Differential diagnosis: seborrheic dermatitis
✽  PRP diagnosis: November 28, 2012 by Michael Golden, MD, Plano, TX
✽  Treating dermatologist: Arturo Dominguez, MD, UT Southwestern, Dallas, TX
✽  Initial Treatment Plan:

▸  Acitretin (25mg to 50mg)
 Triamcinolone (body)
▸  Desonide (face/ears)
 Clobetasol and urea lotion (palms and soles)
 Hydroxyzine (itch relief)

✽  Outcome: In remission as of April 4, 2014
✽  Biopsy history4 biopsies

▸  First three were inconclusive
▸  Fourth biopsy supported PRP

✽  Familial history: None
✽  Genetic testing:  Yes — TJU (no results to share) 

Now It’s Your Turn…

It’s easy to procrastinate, but why not answer the five questions and send the answers, together with your photos, to Yale now? Send what you have to Ted at theodore.zaki@yale.edu. If you have any questions, he is the go-to guy at Yale for the PRP Patient Registry. Call him at (203) 737-4675

1 PRP, 2 PRP, 3 PRP…

And as long as you are in the “sharing information” mode, please complete your PRP Worldwide Census form (if you haven’t already done so). Please go to: http://survey.constantcontact.com/…/a07eer5a6spj94cb3…/start

For those who need to know why the PRP Worldwide Census is so important to the PRP community, please go to http://prpsurvivalguide.org/…/prp-worldwide-census-datapoi…/

OTR26 — Yale University Commits to PRP Patient Registry

TJU Announces PRP Center of Excellence


From the Editor…

In an open letter to the PRP Community, Drs. Uitto, Keller and Ross announced the establishment of the nation’s first PRP Center of Excellence, located at Sidney Kimmel Medical College at Thomas Jefferson University Philadelphia, PA. What does this mean to the PRP community? We have asked questions based on the comments from the PRP community and will update accordingly.

“It is with great pleasure that we write to you to announce the first PRP Center of Excellence at the Department of Dermatology & Cutaneous Biology of Thomas Jefferson University in Philadelphia, PA. This Clinic seamlessly integrates laboratory and clinical sciences to improve patient care and research to advance our understanding of this devastating disease.”

 Will there be more that one PRP Center of Excellence at TJU?

 Is the Center of Excellence a clinic or more than a clinic?

 What is the difference between laboratory sciences and clinical sciences?

“At the PRP Center of Excellence, each patient will have a personalized consultation to review the prior diagnoses, biopsies and treatments with the world’s leading clinical dermatologists, dermatopathologists and basic science researchers in the field of dermatology. Your appointment will include whole body photography to document one’s progress during care, interdisciplinary review of diagnostic data (biopsy and other tests), and access to direct enrollment into clinical research.”

 How much time is allotted for the “personalized consultation”?

“Together with one of our clinical dermatologists, treatment decisions at the PRP Center of Excellence will be based on evidence-based algorithms that draw from research and expert opinions of a variety of medical disciplines to provide you with the greatest chance of successfully and safely treating your PRP.”

✽  How will the PRP Center of Excellence facilitate access to pharmaceuticals that have yet to be approved for PRP by the Federal Drug Administration?

In addition, at Thomas Jefferson University, patients have access to the largest network of tertiary referral center services in the region. This is particularly important because PRP is often accompanied by other diagnoses that can affect quality of life, one’s health and treatment decisions. It is this attention to the whole body that will allow you to heal. Specifically, patients can obtain appointments with therapists, psychologists and psychiatrists within the same building as the Dermatology Clinic to seek care for the depression and anxiety that can often accompany PRP. Patients will also be able to make appointments with Will’s Eye Hospital at Thomas Jefferson University for specialized ophthalmology care as the incidence of damaging conditions of the eye, such as ectropion (outward turning of the eyelid) and keratoco unctivitis (severely dry, pain lly irritated eyes), is increased in PRP. In addition, patients can schedule appointments with other nationally recognized fields such as Jefferson cardiology, endocrinology, gastroenterology, hematology, neurology, oncology, nutrition and integrative medicine to manage any accompanying health concerns.

✽  As a matter of official treatment protocol, will the PRP Center of Excellence refer PRP patients to the following PRP support resources:

▸  National Organization of Rare Disorders: PRP Report
▸  Genetic and Rare Diseases Information Center: PRP Report
▸  PRP Alliance, Inc.
 PRP Survival Guide
▸  PRP Facebook Support Group
▸  PRP Community on RareConnect

The PRP Center of Excellence marks another achievement of the PRP Community in advancing access, quality and value of care. We look forward to continuing to serve the Community and hope to see you soon! To schedule your consultation with Drs. Keller and Ross, please call (215) 955-9295.

✽  Is there an expectation that PRP patients beyond Southeaster Pennsylvania, e.g., New York, New Jersey, Maryland and Delaware will access the resources of the PRP Center of Excellence?

✽  Is there an opportunity for a Second Opinion regarding diagnosis and treatment?

✽  Will other healthcare professionals be able to “consult” with the PRP Center of Excellence?

Sincerely,

Jouni Uitto, MD, PhD, Professor and Chair
Matthew Keller, MD, Associate Professor
Nicholas Ross, MD, Resident-Physician

The announcement was made to the PRP Facebook Community on November 13 and generated an immediate response including 52 LIKES and 38 COMMENTS including the following (as of 11/14/5:17 PM CST):

Teri R — Ft. Wayne, IN
Awesome

Eric S — San Luis Obispo, CA
That is terrific news! Though I am in remission I am glad to know that there is a place specializing in this condition for future sufferers.

Marion M — Ireland
Wonderful news and it will help so many. Well done to all who made it happen.

Margarita B
…find a medicine that puts an end to the PRP!

Anne E — UK
Fantastic News!

Leslie L
So happy to hear this!!! It is wonderful news!! THANK YOU SO MUCH to all who made this possible!!!Abbie C — San Antonio, TXThis is great.Chris U — England, UK
Great news.

Phil P — England, UK
Congratulations to all from over the Pond. PRP on PRP

Alan C — England, UK
This has the potential to be an excellent resource! Well done to all involved in helping and supporting this development!

Cathy H — China Grove, NC
Wow this is wonderful….

Sandi H
This is great news. Thank you for sharing this!

Marianne B  — San Diego, CA
Please tell me how this is going to help anyone if they don’t live in or near Pennsylvania?

Linda B — England

Or even further afield!

Tierney R — Virginia Beach, VA
Travel. I had to drive 5 1/2 hours and spend the night. I raised money through GoFundMe.

Marianne B — San Diego, CA
I will have to drive two weeks and Linda B  will need a ship.

Burt U — Kenedy, Texas
Outstanding

Guy F — Scaggsville, MD
Excellent news! I was treated by Dr. Keller up until April 2017 with significant clearing and I am participating in TJU’s PRP study. I have nothing but good things to say about TJU Dermatology!

Norma M — Chicago, IL
Wonderful news! It’s a start. More centers of excellence will likely follow

Craig W — Charlotte, NC

Epic news!

Connie D — Maitland, FL
Yippee!!!!!!!

 

If you have any question regarding the PRP Center of Excellence at Thomas Jefferson University, please “Leave a Reply” below and we will find the answer for you.

 

OTR26 — TJU Announces PRP Center of Excellence

Thank you for subscribing…

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

TJU & Yale Seek Research Partners

From the Editors: The PRP Community had long lamented the lack of PRP research until Thomas Jefferson University began genetic research in 2012. Three years later TJU initiated a clinical research ieffort that continues today. Recently Yale University has committed to genetic research, a PRP patient registry, and a Burden of Skin Disease study.

Why participate in PRP research at Yale and TJU?

Like many rare disease communities, the PRP community laments the snail’s pace at which PRP research progresses. What should we expect —  it took 61 years just to get the name right. But with your help, we can be part of research that goes beyond description and uncovers the genetic basis for PRP, creates effective treatments, and possibly discovers a cure. Be part of PRP history.

1828
James Shooter became the world’s first patient with what the medical community would eventually call pityriasis rubra pilaris.

1835
Claudius Tarral wrote about the case in “Traite theorique et pratique des maladies de la peau” (Treatise on Skin Diseases), considering it a variant of psoriasis.

1856
Marie Guillaume Alphonse Devergie published the most complete description of PRP. In fact, it was considered to be the “original description” of PRP

1877
Dr. Richaud was the first to recognize PRP as a distinct entity, in his publication “Etude sur le pityriasis pilaris.”

1889
Ernest Bernier presented nine cases in a 120-page article and forever fixed the name of the disease as pityriasis rubra pilaris.

It’s November 1, 2017 and in the 128 years since Mr. Shooter’s onset of pityriasis rubra pilaris. The PRP community has information researchers want.

✽  To learn more about PRP Research opportunities  CLICK HERE

 For a more detailed history PRP (1828-1889CLICK HERE

OTR025.5 TJU & Yale Seek Research Partners

PRP Alliance to Update 2013 Biopsy Poll

From the Editors: During the summer of 2013, a total of 487 PRP patients were polled by email and given an opportunity to participate in a first-of-its-kind PRP Biopsy Poll. Remarkably, within a 3-week period, a total of 256 invitees (52.6%) shared their biopsy experiences and/or recollections.The primary objective of the PRP Biopsy Poll was to better understand the role played by biopsies in the diagnosis of PRP from the perspective of a PRP patient

2013 PRP Biopsy Poll

It was a simple poll with only two questions.

(1)  How many biopsies have you had that supported a PRP diagnosis?
(2)  How many biopsies have you had that failed to confirm PRP?

Based on the results, however, a benchmark for a future biopsy-related survey was established.

✽    Diagnosis with no biopsy ordered: 7.8%
✽    Diagnosis with no contradictory biopsy: 45.3%
✽    Biopsy supported diagnosis: 23.4%
✽    Diagnosis with no confirming biopsy: 23.4%

2018 PRP Biopsy Survey

Since participation in the 2018 PRP Biopsy Survey will require a completed PRP Census form, we will have more dots to connect.

✽    Elapsed time from onset to diagnosis
   Misdiagnoses that preceded the PRP diagnosis
   Adult onset versus juvenile onset (based on onset age)
   Duration based on onset date and current status

Questions to ask dermatopathologists

While we are surveying PRP patients and caregivers, we should recruit an advisory committee of dermatopathologists. The following questions might be a good place to start.

✽    How should a biopsy be performed to increase the likelihood of a timely PRP diagnosis? Is there a right way? Wrong way? Better way?
✽    What specific signs or indicators should a dermatopathologist be looking for as they review the biopsy slides?
✽   Are the characteristics of PRP really so elusive that they cannot be easily seen?
✽   How important is it for the dermatologist who performs the biopsy to specifically instruct the dermatopathologist to “consider” or “look for” PRP.

Path Forward

The ongoing status of the 2018 PRP Biopsy Survey  will be update in future issues of the PRP community newsletter —  On the Road….

For additional information about diagnosing PRP, go to Chapter 2 of the PRP Survival Guide.

PRPA Plans Biopsy & Efficacy Surveys: OTR025.4 

PRP Awareness Month Begins Today


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

1,621 Invited to Share PRP “Core” Data

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.

Still skeptical?


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
 Misdiagnoses
 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)

Email: papa.bill@mac.com
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.

De-identified Data – When shared with PRP researchers like those at Thomas Jefferson University and Yale University School of Medicine or published in the PRP Survival Guide, your data is de-identified. Simply stated, the PRP Community Database reports numbers, not names. Because your data is disassociated with your name, you have complete and total anonymity.
 

 

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

Thank You For Being Counted

 

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)

Why Donate Now?


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”.

Why Now?
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
✽  Misdiagnoses
✽  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:

  Genetic and Rare Diseases Information Center (GARD)
  National Organization of Rare Disorders (NORD)

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.