Canadian Skin Patient Alliance
Who we are:
The Canadian Skin Patient Alliance (CSPA) is a national non-profit organization dedicated to advocate, educate and support Canadians with skin diseases, conditions and traumas.
What we do:
The CSPA serves as an umbrella organization for Canadian patient groups and organizations that focus on skin diseases, conditions and traumas. By working together, we present a strong and united voice to advocate for the needs of skin patients across the country and provide a broad range of education and support.
Our mission is to promote skin health and improve the quality of life of Canadians living with skin conditions that affect skin, hair and nails. We advocate for best treatment options for all skin patients; we educate on a variety of issues affecting these patients; and we support the members of our Affiliate Member organizations who work on their specific disease areas such as acne, scleroderma, melanoma and psoriasis.
Since its creation in 2007, the CSPA has worked to promote skin health and improve the quality of life of Canadians living with skin diseases, conditions and traumas in partnership with industry, government and other non-profit organizations. Throughout its successful history, it is an organization run by patients, for patients, and as it moves into its second decade, it is well-positioned to meet the challenges and opportunities of the future.
What our Priorities are:
Priority #1: Increase our presence by creating greater brand awareness, strong networks for patients and families and mutually supportive relationships with Affiliate Members.
Priority #2: Empower patients and their families and Affiliate members through knowledge, education and access to information.
Priority #3: Lead, as a respected voice, on key issues for skin patients and their families and Affiliate Members.
What we have accomplished:
- Clarified our role and vision for working with the 23 Affiliate Members in Canada and 4 Global Collaborators. For a complete list, see: http://www.canadiansk in.ca/a bout-us.
- Expanded our community of reach to include health care professionals beyond dermatologists to be reflective of the diseases represented by our Affiliate Members.
- Participated in a variety of new conferences as exhibitor including the Family Medicine Forum, the World Congress of Pediatric Dermatology, the Symposium on Hidradenitis Suppurativa Advances, the Canadian Rheumatology Association etc.
- Continue to produce a high-quality magazine, “Canadian Skin”, three times per year which is distributed to dermatology offices across the country.
- Worked with new patient groups to start up patient associations or meetings for their particular disease area such as hidradenitis suppurativa and ichthyosis.
- Completed a Clinical trials project to encourage patients to consider trials as a treatment option.
- Involved in twitter chats and specific campaigns designed to empower patients (hidradenitis suppurativa, Human papilloma virus, impetigo etc.)
- Worked on disease-specific reports (hidradenitis suppurativa, atopic dermatitis) and accompanying infographics designed to empower patients. Video on atopic dermatitis was recently completed.
- Updated our website to ensure that the information is accessible on mobile devices and translated to be available in both official languages of Canada.
- Participated in several on-line campaigns to promote HPV Aware ness Week, World CIU Day, Patient Solidarity Day, and World Psoriasis Day Priority
- Developed an election position statement to distribute to party leaders as elections take place in various provinces and territories.
- Developed a Patient Charter for Canadians Living with Conditions, Diseases and Traumas Involving the Skin.
- Continue to provide the patient perspective into health technology assessments as new treatments are approved in Canada for skin diseases, conditions and traumas.