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

Rare Skin Disease Referral Initiative Update

What is the Basic Problem to be Solved?

When a patient is diagnosed with pityriasis rubra pilaris (PRP), the dermatologist — with very rare exceptions — does not refer their patient to the PRP Alliance, PRP Survival Guide, PRP Facebook Support Group, or the PRP Community on RareConnect. Typically, the patient is referred to the internet where search engines (Google, Yahoo) retrieve information that can be redundant, insufficient, outdated, and written for an audience of healthcare professionals— not patients and their caregivers.

With an estimated 574 rare skin diseases inflicting pain and suffering, it is absolutely unreasonable to expect healthcare professionals to keep track of disease-specific patient support organizations and other patient-centric resources for rare diseases like PRP.

What is the Solution?

The solution is actually quite simple. When a patient is diagnosed with a rare skin disease (less than 200,000 effected patients in the US), the standard therapy should include two referrals that are recorded in the patient’s electronic medical record:

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

What Do GARD and NORD Accomplish?

Reliable information about rare or genetic diseases is often hard to find. GARD and NORD offer patients with a rare skin disease — and their caregivers — a reliable roadmap to the resources they need.

✽  GARD website

✽  GARD Rare Disease Database  (SEE GARD PRP Report, Revised 11/2017)

✽  GARD Patient, Families and Friends

✽  GARD Information Specialists — Whether by phone, fax or email, the public has access to current, reliable, and easy-to-understand information in English or Spanish. Toll-free Telephone: 888 205-2311; Email: GARDinfo@NIH.gov/

✽  NORD Website

✽  NORD Rare Disease Database — SEE NORD PRP Report

Step One — Jump Start the Campaign

The Rare Skin Disease Referral Initiative is a year-long campaign that began with the mailing of an “Advocacy Packet” to the following:

TEACHING HOSPITALS

✽  Leadership (Chairs) of the dermatology departments at 88 teaching hospitals in the U.S.

ORGANIZATIONS

✽  American Academy of Dermatology
✽  Society of Dermatology Physician Assistants
✽  Dermatology Nurses’ Association

MEDIA

✽  Dermatology Times
✽  The Dermatologist
✽  Dermatology News

The first salvo of “advocacy packets” was funded by members of the the PRP Facebook Support Group and included the following components. Click the link to see what recipients received.

✽  Cover Letter
✽  Factsheet
✽  GARD brochure
✽  NORD PRP Report — reprinted with permission fs

Step Two — AAD Annual Meeting

The next step in the promotion of the Rare Skin Disease Referral Initiative is to take full advantage of the American Academy of Dermatology annual meeting to be held in San Diego, CA. (February 16-19). The PRP Alliance will be attending the four-day event as a member of the Coalition of Skin Diseases with access to dermatologists, dermatology physician assistants, dermatology nurses and 300-plus exhibitors who sell products and services to dermatologists for patient care.

Step Three — The Hard Work of Advocacy

The third step (March-October, 2018) depends on who will join the effort.

✽  Will it be patients and caregivers who tell their dermatologists about GARD and NORD?
✽  Will AAD, DNA and SDPA tell their members?
✽  Will Dermatology Times, The Dermatologist and Dermatology News publish articles about the Rare Skin Disease Referral Initiative?

For the moment, we will focus on Step 2 and see what can make happen in San Diego.

OTR26 Rare Skin Disease Referral Initiative Update

 

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

PRP Outreach to US Teaching Hospitals

 

From the Editors: Most PRP patients and caregivers are given very little guidance after their PRP diagnosis is rendered. Referrals to Dr. Google and Dr. Yahoo are quite standard, Balderdash! The PRP Alliance has self-financed an outreach effort to 87 of the dermatology departments of our nation’s teaching hospitals advocating a standard referral to GARD and NORD.

What’s standard treatment protocol?

When a dermatologist diagnoses a rare skin disease, the patient is prescribed an appropriate therapy. Predictably, the initial treatment plan will include systemic and topical therapies as appropriate. However, there’s something that most, if not all patients are missing: a referral to the Genetic and Rare Diseases Information Center (GARD).  

Without a rare skin disease referral to GARD…

A newly diagnosed patient leaves the dermatology clinic with a treatment plan, prescriptions to fill at the local pharmacy, the required paperwork and an appointment to return at a later date. For patient and caregivers, their journey has begun with little more than the name of the rare skin disease and a tacit referral to Dr. Google and Dr. Yahoo. As questions arise in the days and weeks that follow, the information unearthed via search engines is too often redundant, insufficient, outdated, and typically written for an audience of healthcare professionals.

What happens with a referral to GARD?

GARD, a program of the National Center for Advancing Translational Sciences, is funded by the National Institutes of Health. The office supports a variety of programs to serve the needs of patients who have any one of approximately 7,000 rare diseases known today. Their rare disease database includes information on each of 597 rare skin diseases.

Who can GARD help?

✽  Your patients diagnosed with a rare skin diseases
✽  The people who care for your patients: parents, family members, and friends
✽  Doctors, nurses, and other healthcare providers
✽  Scientists who are studying rare skin diseases and need information for their research

How will PRP patients and caregivers will find what they seek?

Reliable information about rare or genetic diseases is often hard to find. Your patients will have a roadmap to the resources they need from this dependable source.

GARD website
PRP patients and caregivers have online access to reliable information about their newly diagnosed rare disease to include symptoms, cause, diagnosis, treatment, research, daily life and support organizations.

GARD “Learn More” Opportunities
Links to resources where patients can find more information, e.g. the National Organization of Rare Disorders.

GARD Information Specialists
Whether by phone, fax or email, the public has access to current, reliable, and easy-to-understand information in English or Spanish.

✽  Toll-free Telephone: 888 205-2311
✽  Email:  GARDinfo@NIH.gov/

Scope

The target audience for the Rare Disease Awareness Initiative includes “leaders” at teaching hospitals in the U.S. with a dermatology department, e.g., Department Chair. We will also reach out to leadership in the following:

✽  American Academy of Dermatology
✽  Society of Dermatology Physician Assistants
✽  Dermatology Nurses’ Association

Methodology

The Rare Disease Awareness Initiative is organized around a “Referral Packet” containing the following:

✽  Cover letter
✽  PRP Referral Protocol
✽  GARD brochure
✽  NORD PRP Report (16 pages)

Who to thank

✽  The Genetic and Rare Diseases Information Center for the services they routinely provide as well as brochures for the 100 “Referral Packets” 
✽  The National Organization for Rare Disorders for allowing the PRP Community to take a leadership role in rewriting the NORD PRP Report 
✽  A dozen members of PRP Facebook Support Group who donated $1,100 to make the Rare Disease Awareness Initiative a reality, e.g., printing, postage, etc.

 

PRP Outreach to US Teaching Hospitals: OTR025.3 

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

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.

PRP Worldwide Census — Sharing Your Journey


Editor’s Note: The following post was shared with the PRP Community on November 1, 2017 as we kicked off the 2017 PRP Worldwide Census. The last PRP Census began on November 1, 2013 and formed the foundation of the current PRP Community Database.

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.

The fact that that I was 66 years old when my PRP journey began is important to me but has limited value to others. In contrast, researchers would find value in the fact that 435 (50.9%) of the 854 PRP patients providing onset age data  in the PRP Community Database have an onset age of 50 or older. Now imagine a chart illustrating the distribution of onset age from birth to 90 years — data representing 1,500 patients diagnosed with PRP. We have an opportunity to quantify what others can only guesstimate.

Sharing of DataThe 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? Let’s look at the 2017 PRP Worldwide Census and the core data we seek.

✽   Name of the person diagnosed with PRP: Bill McCue

✽   Name of the person completing the census form, if not the patient, e.g., mother, spouse, etc.: N/A

✽  Email address (required to verify that the census data is legitimate. Your email address is never shared and you can opt-out of the PRP Community Newsletter, no questions asked.)  papa.bill@mac.com

✽  Location (city/state, province/country; no address or ZIP/Postal Code): Plano, TX

✽  Onset date (mm/yyyy or mm/dd/yyyy): August 8, 2012

✽  Onset age (year or years/months): 66 years, 2 months

✽  Misdiagnoses: seborrheic dermatitis

✽  Diagnosis date: November 28, 2012

✽  Biopsy comment: Biopsies #1 to #3 were inconclusive, #4 supported PRP. My dermatologist instructed the dermatopathologist to specifically look for PRP.”

✽ Treatment (oral or injection — from a list of drugs. This information will be used for a followup survey on the efficacy of specific drugs): acitretin

✽  Dermatologist of record (trying to identify PRP-savvy dermatologists): Arturo Dominguez, MD, University of Texas Southwestern, Dallas, TX 

✽  Current Status: Remission

✽  Remission Date (if current status is “In Remission”): April 8, 2014

Once submitted, your information may be updated or amended at any time.

We are looking for 12 datapoints. An even dozen. The 2017 PRP Worldwide Census begins on November 1, 2017. Questions should be sent via email to bill.mccue@prpAlliance.org.

2017 PRP Worldwide Census Starts Here

 

PRP Worldwide Census: Sharing your journey

 Diagnosing PRP Survey

Objective
To better understand the role played by dermatologists and dermatopathologists in the diagnosis of PRP.

Problem to be addressed
While some PRP patients enjoy a relatively quick diagnosis of PRP, many of us have had to suffer through a differential diagnosis that preceded the “official” PRP diagnosis. During that time either the wrong treatment was administered or the appropriate treatment was delayed. Understanding the diagnosis of PRP would seem to be an important part of our journey from onset to remission,

Scope
The entire worldwide PRP community will be surveyed.

Methodology
The PRP Community Database and the technical resources of Constant Contact will be used to execute the Dx PRP Survey.

Measuring Success
The original PRP Biopsy Poll was conducted in the Summer of 2013 and reported findings based on 256 PRP patients. The goal for the PRP Diagnosing PRP Survey will be a minimum of 500 participants.

Diagnosing PRP Survey