Rare Skin Disease Advocates in Canada
International Alliance of Dermatology Patient Organizations 
From the IADPO website: People living with dermatological conditions face stigma, shame and other psychosocial challenges in addition to the physical symptoms of their disease. For many patients, this is a lifelong burden. And in many cultures, this can have devastating social impacts. This must change. Together, we can make it happen.
The International Alliance of Dermatology Patient Organizations (IADPO) – also known as GlobalSkin – is a unique global alliance serving patient organizations to improve the lives of dermatology patients worldwide. Our not-for-profit organization, which is based in Canada, is focused on three pillars: research, Advocacy and Support; GlobalSkin envisions a world in which people living with dermatological diseases and skin traumas can easily access the care and treatment they need, when they need it, and can live without stigmatization, persecution, or economic disadvantages due to their conditions.
GlobalSkin is working with more than 160 patient association members ─ located in 50 countries representing more than 60 disease areas ─ to improve the lives of those affected by dermatological conditions throughout the world by:
❇︎ initiating dialogue and advocating for access to new and existing treatments, and dermatological care to improve patients’ quality of life;
❇︎ raising the awareness of the incidence of, and the challenges for, people living with serious dermatological diseases to create better understanding; and
❇︎ supporting our Members, not-for-profit dermatology patient organizations, through education, global campaigning, sharing of best-practices and beneficial networking opportunities to strengthen support for patients and build a strong, inclusive movement;
❇︎ building special focus communities; and
❇︎ conducting patient–initiated research.
We appeal as one voice to the World Health Organization and other key influencers to recognize the debilitating nature of dermatological disease so that more resources for research and treatment options are made readily available to those afflicted and in need of help. The common thread through these important IADPO initiatives is credible data, which we will collect in the first-ever global patient-initiated ‘impact of skin disease’ research project, expected to have a profound and lasting impact on key decision-makers. By collecting data from the dermatology patient perspective to represent various real-life conditions around the world, the dermatological community will gain better awareness, making it easier to truly help patients. Together, we are stronger.
Editor’s Note: The PRP Alliance is a founding member of IADPO
Canadian Skin Patient Alliance (CSPA)
From the CSPA website:
Canadian Organization for Rare Disorders (CORD)
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. One in 12 Canadians has a rare disorder. Many others are affected or at risk but remain undiagnosed and unaware.
CORD provides information to individuals, and links to other rare disorder support groups and organizations from Prince Rupert, British Columbia to St. John’s, Newfoundland. CORD represents the orphan disorders community in the development of Canadian Orphan Drug Policy, including the proposed Expensive Drugs for Rare Disorders program within the National Pharmaceutical Strategy CORD is working to promote state-of-the-art Newborn Screening in all provinces and territories.
CORD is working to ensure Canada’s Clinical Trials Registry works effectively for those with rare disorders. CORD is committed to increasing access to genetic screening and genetic counselling for all rare disorders.
Rare Disease Foundation
From the Rare Disease Foundation website: The Rare Disease Foundation was founded in Vancouver, British Columbia in February 2008 by a group of parents to children with a rare disease and two physicians. Disheartened by their firsthand experience of lack of support and resources for families impacted by a rare disease, they united their efforts to find clinical answers and provide concrete solutions to rare disease patients, families and their caregivers.
Part of the problem in finding clinical answers lay in the unique nature of these rare disorders, which meant research and pre-existing treatments were unavailable. However, the main obstacles were the financial and administrative barriers to access research grants for rare diseases. As traditionally, grant funding is allocated to diseases that impact greater global populations, those affected by a rare disease were rendered invisible, with no voice and ability to be heard.
The Rare Disease Foundation was built on the principle to be a catalyst for change through our microgrant research funding program and support services. We envision a society where rare disease care and treatment is accessible to all. The Rare Disease Foundation’s mission is to transform the lives of Canadians and global citizens living with a rare disease by revolutionizing awareness, developing innovative cures through our research programs, and providing resources through community and clinical support channels.