Update from the Canadian Skin Patient Alliance

Apr 10, 2020
Author: 
Rachael Manion, Executive Director, Canadian Skin Patient Alliance

The Canadian Skin Patient Alliance (CSPA) is a national not-for-profit organization dedicated to advocating, educating and supporting Canadians who live with skin diseases, conditions and traumas. The CSPA is proud to have the trust and support of donors and sponsors who provide the ability to invest in cutting-edge research, proactive advocacy and innovative information and support solutions that will deliver better health outcomes and quality of life for people affected by skin disorders.

The CSPA serves as an umbrella organization for Canadian not-for-profit patient groups and organizations that deal with skin conditions and diseases: our Affiliate Members. You may be familiar with our magazine, Canadian Skin (À Propeau en français), which is available for free for dermatologists, patients, and interested readers. Through collaboration with our Affiliate Members, we developed the Skin Patient Charter of Rights, which sets out the rights of skin patients to be free from stigma and receive information, benefits and holistic supports.

The last few weeks have been particularly challenging for our community. At the Canadian Skin Patient Alliance (CSPA), we are working harder than ever to address the needs of our community in these times of uncertainty. Collaborating with our Medical Advisory Board and other experts, we have launched a dedicated COVID-19 resource page on our website to answer frequently asked questions from our patient community about the pandemic and its implications. We have also launched a drug shortages survey for skin patients to let us know if they are having difficulty accessing medications for their skin or other conditions.

In research news, CSPA is delighted to be working closely with researchers across Canada as part of the Skin Investigation Network of Canada (SkIN Canada), which received a CIHR Network Catalyst Grant. The CSPA Executive Director, Rachael Manion, is chairing the Patient Advisory Council and leading patient engagement throughout the network. CSPA has put out a Call for Expressions of Interest for patients interested in becoming Patient Research Partners in the Network. We invite you to share this opportunity with your patients who may be interested in shaping skin disorder research in Canada.

If you have any questions or would like to learn more about the CSPA, please reach out to us at info@canadianskin.ca.

Man's face with the text: you have rightsSkin Patient Charter of Rights