From the Editor…
There are so many activities that could lessen the burden of pityriasis rubra pilaris on the body, mind and spirit of PRP patient and caregivers.
✽ Some efforts may be undertaken by one person; other efforts will require a group.
✽ Some activities can be accomplished at no cost, others will require funding.
✽ Some advocacy activities may be completed in less than an hour; others require a sustained effort over several months, if not years.
The following AGENDA has been created to help track the PRP advocacy-related efforts of the PRP Facebook and RareConnect communities, the PRP Alliance and PRP Survival Guide.
AGENDA #1
Rare Disease Organization Advocacy
Posted: June 11, 2017. There are six Rare Disease Organizations
✔︎ National Organization of Rare Disorders
https://rarediseases.org
What they say about themselves: “NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 260 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.”
IMMEDIATE PROBLEM: While the PRP Alliance is a member of NORD, there are two glaring omissions.
✽ PRP Facebook Support Group with nearly 1,000 members is not listed
✽ PRP Community on RareConnect — an initiative of EURORDIS with over 200 members is not listed
✔︎ EURORDIS — Rare Disease Europe
http://www.eurordis.org
What they say about themselves: “EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 755 rare disease patient organisations in 67 countries. We are the voice of 30 million people affected by rare diseases throughout Europe.”
IMMEDIATE PROBLEM: Not linked directly to the PRP Alliance, PRP Survival Guide or even the PRP Community on RareConnect. RareConnect is an initiative of EURORDIS and NORD.
✔︎ Rare Disease UK
https://www.raredisease.org.uk
What they say about themselves: “Rare Disease UK (RDUK) provides a united voice for the rare disease community by capturing the experiences of patients and families. We work with our supporters to raise the profile of rare diseases across the UK. We seek to bring about lasting change offering better health and quality of life for individuals and families affected by rare diseases. We work with health departments across the UK to implement the UK Strategy for Rare Diseases to ensure that patients and families living with rare conditions have equitable access to high quality services, treatment and support.”
IMMEDIATE PROBLEMS: No link to the PRP Alliance, PRP Facebook Support Group and the PRP Community on RareConnect.
✔︎ Canadian Organization for Rare Disorders
https://www.raredisorders.ca
What they say about themselves: “CORD is Canada’s national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada.”
IMMEDIATE PROBLEMS: (1) No information about pityriasis rubra pilaris and (2) no link to the PRP Alliance, PRP Facebook Support Group or the PRP Community on RareConnect.
✔︎ Rare Voices Australia
https://www.rarevoices.org.au
What they say about themselves: “Company advocating for Australians impacted by rare disease. RVA provides a strong common voice to promote for health policy and a healthcare system that works for those with rare diseases. RVA operates under a membership model with over 200 Rare Disease Patient Organisations listed as paid members and represents the rare disease patient perspective. ”
IMMEDIATE PROBLEMS: (1) No information about pityriasis rubra pilaris and (2) no link to the PRP Alliance, PRP Facebook Support Group or the PRP Community on RareConnect.
✔︎ New Zealand Organization of Rare Disorders
http://www.nzord.org.nz
What they say about themselves. “Our mission is to support, assist and promote better health care and well-being for patients and their families living with a rare disorder in New Zealand. One of NZORD’s priorities is to maintain and improve the information we offer to anyone seeking information about rare disorders, and assisting those patients and their families to find support.
IMMEDIATE PROBLEM: NZORD does not list rare disease patient organization. Rather, they provide links to the Genetic and Rare Disease Information Center and National Organization of Rare Disorder’s websites. There is an opportunity, however, to shine a spotlight on PRP by telling the story of New Zealanders with PRP.
AGENDA #2
Reinstatement of GARD’s listing of the PRP Alliance
✔︎ Genetic and Rare Diseases Information Center
https://rarediseases.orghttps://rarediseases.info.nih.gov
What they say about themselves: “The Genetic and Rare Diseases Information Center (GARD) is a program of the National Center for Advancing Translational Sciences (NCATS) and is 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.”
IMMEDIATE PROBLEM: The PRP Alliance successfully lobbied GARD to be listed under the subhead Organizations Supporting this Disease (pityriasis rubra pilaris). We have been listed since November 2015. At that time we were also successful in getting both the PRP Facebook Support Group and the PRP Community on RareConnect added under “Social Networking Websites”.
In mid-january 2017, however, the PRP Alliance website vaporized when a series of servers imploded. The robust website (480 posts, 300 images and an archive of newsletters totally 598 pages) was replaced by a temporary page.
Regrettably, the relaunch of prpAlliance.org has be delayed for over six months. In the interim, the listing of the PRP Alliance, and the link to prpAlliance.org, has be removed. GARD has assured us that the PRP Alliance listing and link will be reinstated upon relaunch.
The focus now shifts to the relaunch.
AGENDA #3
Advocate Rare Disease Referral Protocol
Posted: June 11, 2017.
IMMEDIATE PROBLEM: For a variety of reasons, some legal and others harnessed to the status quo, a dermatologist with a patient diagnosed with pityriasis rubra pilaris will not provide that patient with a link to the PRP Alliance, PRP Facebook Support Group or PRP Community on RareConnect. Nor will that dermatologist acknowledge the availability or provide a link to the PRP Survival Guide. If a referral is provided, it is to Dr. Google, Dr. Yahoo and/or Dr. Bing.
While we have no data to support the conclusion, it appears that PRP patients in the United Kingdom may be referred to the British Association of Dermatologists and a PRP “Leaflet” containing the contact information for the PRP Alliance and the PRP Community on RareConnect.
Simply stated, the advocacy of a Rare Disease Referral Protocol would focus on the following:
✽ American Association of Dermatology
✽ Dermatology Departments of the 500-plus teaching hospitals
✽ Society of Dermatology Physician Assistants
✽ Dermatology Nurses Association
… MORE TO FOLLOW
PRP Advocacy Agenda