The CSPA is a not-for-profit organization for all Canadians touched by skin, hair, and nail conditions, skin patient support groups and organizations, physicians and researchers focused on finding appropriate treatments for skin conditions, diseases and traumas. The organization is governed by a Board of Directors comprised of skin patients and representatives of Affiliate Members. The CSPA liaises with the Canadian Dermatology Association, has a Medical Advisory Board made up of leading dermatologists and has strong relationships with industry stakeholders.
The CSPA has a mandate to promote education and awareness and to direct patients to support in Canada. Advocating for the needs of all Canadian skin patients, the CSPA is committed to improving skin disease management across the country.
But we know we can’t do this alone. In Canada, the CSPA & its Affiliate Members strive to work together to provide education & support to specific skin patient populations. We believe that there is strength in numbers.
CSPA Global Collaborator for patient groups outside of Canada
In some cases, patient organizations outside of Canada may wish to connect with the CSPA and our patients. These disease-specific organizations who wish to become a CSPA Global Collaborator must meet some basic criteria. The CSPA welcomes the involvement of any patient or any non-profit organization whose goals align with ours - to improve the quality of life for Canadians with skin conditions, diseases or traumas. As well, the CSPA hopes that the Global Collaborator can nurture any partnerships with any Canadian counterparts.
A CSPA Global Collaborator is an incorporated not-for-profit organization or registered charity that exists to help people deal with a skin, hair or nail condition(s), disease(s) or trauma(s) by providing support, education, information, and/or undertaking or supporting fundraising, research and/or advocacy on their behalf that has been accepted by the Board of the CSPA upon recommendation by the CSPA Affiliate Member Sub-Committee for membership.
As a matter of policy, which is designed to maintain the CSPA’s good standing in the community, the CSPA invites only organizations who share its vision and its approach to carrying on its affairs. Of particular importance to the CSPA and its stakeholders are the following. The organization is:
- Established, in good-standing and abiding accordingly to the laws & regulations of their country.
- Willing to acknowledge or collaborate with or support the establishment (directly or indirectly) of the Canadian disease-specific patient organization.
- Working on patient-focused programs and initiatives.
- Transparent & is fiscally responsible.
- Unbiased neutrality with respect to recommendations for treatments for diseases (Ex: no direct advertising for sponsors’ products or any products not authorized for marketing in Canada).
- Monitored by a functioning governance model with structured clinical advice from a relevant health-care professional or team.
- Global Collaborator applications are free of charge.
- Unless approved by the Executive Committee, no financial support will be provided to Global Collaborators.
- The CSPA can provide documentation/communications in French or English. Any further required translation costs are the responsibility of the Global Collaborator.
- An endorsement letter by a “sponsor” from the country of origin may be requested at any time.
- Global Collaborators must request permission in advance to use the Canadian Skin Patient Alliance name or logo on any material.
- Global Collaborators do not have any voting rights on the CSPA board of directors but may volunteer on a CSPA Committee.
- The failure to maintain in good standing or to give true and complete details or any type of misconduct may result in being expelled as a Global Collaborator.
Application to join as a Global Collaborator
Current Global Collaborators
Basal Cell Carcinoma Nevus Syndrome Life Support Network: www.bccns.org
The mission of the Basal Cell Carcinoma Nevus Syndrome(BCCNS) Life Support Network is to promote access to the most effective and appropriate treatments for individuals with the condition. The Network is dedicated to providing support, counseling and educational programming for affected children and adults as well as family members and caregivers.
The Cutaneous Lymphoma Foundation is an independent, non-profit patient advocacy organization dedicated to supporting every person affected by cutaneous lymphoma by promoting awareness and education, advancing patient care, and facilitating research. We offer programming for both the newly-diagnosed patient and those who have been living with their diagnosis for a long time, providing information that can help improve and maintain quality of life while living with cutaneous lymphoma. We exist to make sure that each person with cutaneous lymphoma gets the best care possible.
The Foundation for Ichtyosis and Related Skin Types (FIRST) specializes in supporting patients and families affected with ichthyosis and related skin types.
HSconnect.org is an online platform for those who suffer with Hidradenitis Suppurativa (HS). We offer various resources, articles, research and tools as well as a link to our HS Facebook support group. HSconnect is a great resource for those newly diagnosed or those who have suffered for years.
NOAH (National Organization for Albinism and Hypopigmentation) is a genetic support group that acts as a conduit for accurate and authoritative information about all aspects of living with albinism. NOAH sponsors conferences, meetings and camps where people with albinism and their families in the U.S. and Canada can find acceptance, support, and fellowship. Information sources provided by NOAH include an extensive website, an online resource library, a quarterly magazine, two parent books and a library of videos on YouTube.
The PRP (Pityriasis Rubra Pilaris) Alliance is a 501(c)(3), nonprofit, patient advocacy organization. Our mission is to advocate for the timely and accurate diagnosis of pityriasis rubra pilaris (PRP), the implementation of more effective and accessible treatment options, and an increase in PRP-specific research.
Skin Sri Lanka
SKIN SRI LANKA is the first national non-profit organization dedicated to advocate, educate and support SriLankan’s living with skin-related diseases, conditions and traumas. By working together, we advocate for the needs of skin patients across the Island and provide a broad range of education and support.
The Cuban Vitiligo Support and Research Group mission is:
- Providing psychological support to patients and families in order to face life positively.
- Investigating and collaborating with research projects aimed at finding a cure for vitiligo
- Raising awareness of the disease significance in the population to avoid any kind of discrimination due to the condition.