From the Editor…
There are many advocacy activities that could lessen the burden of pityriasis rubra pilaris on PRP patient and caregiver worldwide.
❏½ Some advocacy efforts may be undertaken by one person; other efforts will require a group.
❏½ Some advocacy activities can be accomplished at no cost, others will require funding.
❏½ 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 (originally posted : June 11, 2017) has been created to encourage the PRP Facebook and RareConnect communities, the PRP Alliance and PRP Survival Guide to undertake Rare Disease Organization Advocacy.
Agenda
There are six Rare Disease Organizations worthy of the attention of the PRP community.
✔︎ 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.
❏½ PRP Facebook Support Group with nearly 1,000 members is not listed
❏½ 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.
ADVOCACY OPPORTUNITY: While NZORD does not list rare disease patient organizations, they provide links to the Genetic and Rare Disease Information Center and National Organization of Rare Disorder’s websites. There is an opportunity to shine a spotlight on PRP by telling the story of New Zealanders with PRP.
✔︎ Irish Skin Foundation
https://irishskin.ie
What they say about themselves. The Irish Skin Foundation (ISF) is a national charity with a mission to support people with skin conditions. We operate a Helpline, provide up-to-date specialist guidance, run events, awareness campaigns and engage in advocacy for people with skin conditions. We work with people in the dermatology community (people with skin conditions, GPs, nurses, physicians and healthcare providers) to produce accessible health promotion and awareness materials. Our aim is to empower people with skin conditions, support timely diagnosis and treatment, and promote public awareness. The also ISF represents people with skin conditions and advocates on their behalf.
ADVOCACY OPPORTUNITY: While the ISF does not list rare disease patient organizations, they provide a link to the British Association of Dermatology website’s PRP Leaflet. There is an additional opportunity to shine a spotlight on PRP by telling the stories of PRP patients in Ireland.
Rare Disease Organization Advocacy