Affliated Groups - Overview
Tanny Nadon Affiliate Members Grant (2015-2021)
The Canadian Skin Patient Alliance (CSPA) allocated funds to support educational activities of our Affiliate Members through the Tanny Nadon Affiliate Members Grant (2015-2021). Eligible projects included, but were not limited to, websites, pamphlets, newsletters and endeavours that served to raise visibility or awareness.
Tanny Nadon was an inaugural member of the CSPA Board of Directors and a founding member of the Alberta Society of Melanoma, (that has since merged with Affiliate Member, Save Your Skin Foundation). Ms. Nadon's legacy will continue to be honoured by CSPA through a new initiative set to launch in summer 2021.
|2021- April||Canadian Psoriasis Network and Hidradenities & Me Support Group.|
|2020 - October||Canadian Alopecia Areata Foundation (CANAAF)|
|2020 - April||DEBRA Canada|
|2019 - October||Canadian Burn Survivors Community|
|2019 - April||The Alberta Society of Melanoma|
|2018 - October||
Canadian Alopecia Areata Foundation (CANAAF)
2018 - April
Scleroderma Society of Canada
2017 - October
Canadian Skin Cancer Foundation
2017 - April
Canadian Burn Survivors Community
2016 - October
Save Your Skin
2016 - April
Scleroderma Association of BC.
2015 - October
Canadian Skin Cancer Foundation
Current Affiliate Members
A number of organizations work together with us to improve the lives of skin patients and their families in Canada. They are:
We’re here for advice and support. We provide education and we’re a useful source of information. And we also see it as our role to generate as much public awareness and understanding of what living with a facial difference means to those affected. We had to sum up what AboutFace:
AboutFace ENCOURAGES – We believe knowing you are not alone is the first step in embracing the journey.
AboutFace EMPOWERS – We believe building on strength and character helps develop a sense of purpose.
AboutFace EDUCATES – We believe education is critical to nurturing understanding and acceptance.
Alberta Lymphedema Association
The Alberta Lymphedema Association (ALA) is a charitable organization founded in 2003 by a team of people who recognized the need to help people living with, or at risk of, lymphedema. A learning association committed to the ongoing education of its stakeholders, ALA works to make a difference and empower affected individuals and their families to help manage this condition. ALA works from the patient standpoint.
Acne and Rosacea Society of Canada
The Acne and Rosacea Society of Canada’s mission is to improve the lives of 7 million Canadians suffering from acne and rosacea by raising awareness and by providing independent, reputable information. Our society comprises dermatologists, educators, communicators and patients. Since acne and rosacea appear on the face in most people and affect appearance, there can be significant emotional distress in addition to the visible signs. There may also be permanent skin damage such as scarring.
BC Lymphedema Association
The BC Lymphedema Association is the provincial resource for promoting healthy and hopeful living with lymphedema. Our goals are to build awareness across BC and provide information about lymphedema and available treatment/management options.
Camp Liberté Society provides a summer camp experience for Canadian children with moderate to severe skin conditions. Campers are provided an opportunity to grow in conﬁdence and self-esteem through a multi-cultural outdoor camping experience in a fun, safe, bilingual, environment.
Campers return from Camp Liberté with more confidence, a greater appreciation for nature, and long-lasting relationships.
Canadian Alopecia Areata Foundation
On behalf of Canadians who have been diagnosed with alopecia areata, the Canadian Alopecia Areata Foundation supports those affected by alopecia areata, promotes awareness and education of this auto-immune disease and raises funds for research.
Canadian Burn Survivors Community
The Canadian Burn Survivors Community (CBSC) is a community comprised of burn survivors, firefighters, burn unit staff, and advisors who have come together to offer support and education to any person or people that have been affected by burns.
Our main objective is to help support the development of the psychological well-being of burn survivors in Canada. We provide an avenue for the sharing of materials and programs in our quarterly newsletter, we try to assist in the prevention of burns in Canada, and we encourage professional development of firefighters, health care providers, and anyone affected by the trauma of burns in Canada. We ensure that there is a conference held every second year in Canada so that burn survivors can come together to share their stories and heal.
Canadian Association for Porphyria
The mission of the Canadian Association for Porphyria/Association Canadienne de Porphyrie is:
- to deliver evidence-based information and support to patients with porphyria, their families, health care providers and the general public across Canada
- to achieve standards and evidence-based comprehensive care for all people with porphyria throughout their lifespans.
Canadian Psoriasis Network
We are the Canadian Psoriasis Network (CPN). Our goal is to improve the quality of life of all Canadians who are living with psoriasis and psoriatic arthritis while vigorously pursuing a cure. Our mission is to provide all current information on treatment and continuing care through education, outreach, research and leading by example.
Canadian Skin Cancer Foundation
The Canadian Skin Cancer Foundation has a vision: a world without skin cancer! Because skin cancer is a highly preventable disease we believe we can achieve this vision through education around awareness around prevention and early detection. Our mission statement is: To prevent and eradicate skin cancer through education, awareness, advocacy and research.
Chronic Urticaria Society
Chronic Urticaria Society is a group of specialists, and patients with chronic urticaria, that aims to:
- improve the health and quality of life of people dealing with chronic urticaria;
- find ways to support the advancement of knowledge and research on chronic urticaria;
- search for relevant, updated information on chronic urticaria, validate it, and make it available;
- influence decisions within the medical community, governments, and other stakeholders;
- raise awareness of this condition;
- inform and train medical staff so they can diagnosis correctly and better refer patients to the specialists they need.
DEBRA Canada We stand together for Canadians affected by Epidermolysis Bullosa (EB) in raising awareness, supporting the community through our programs, services, education, advocacy, and research.
Eczéma Québec was created as a branch of the McGill University Hospital Network Center ofExcellence for Atopic Dermatitis. It is a network of patients and healthcare practitioners, and it was created to build resources based on international best-practice guidelines. Eczéma Québecaims to partner with patients to improve education and experience of care, to increase knowledge of atopic dermatitis by researching disease factors, as well as to promote awareness and the health of our population.
Eczema Society of Canada
Eczema Society of Canada (ESC) is a registered Canadian charity dedicated to improving the lives of Canadians living with eczema. Our mandate includes eczema education, support, raising awareness, and research. To find help living with eczema, contact us. We're here to help.
Fire Fighters Burn Fund
The Firefighters Burn Fund was created in March 1978 and is a registered charitable organization, duly incorporated in the Province of Manitoba. Originally organized by Winnipeg firefighters, the Burn Fund now involves and is supported by members of the Fire Service throughout Manitoba.
The Firefighters Burn Fund is a volunteer-run organization. No salaries are paid to any Board Member or volunteer. The Burn Fund is not a member agency of The United Way, nor does it receive government grants. Therefore, we rely entirely on donations and proceeds from fundraising activities.
The Burn Fund supports ongoing educational opportunities for members of the Burn Team (Nurses, Occupational Therapists, Physiotherapists). This includes continuing educational seminars, conferences, developing research skills, etc.
Hidradenitis and Me
Hidradenitis & Me Support Groupis a not-for-profit organization whose mission is to promote self-care and awareness. Organizers facilitate monthly support group sessions via Zoom the last Tuesday of the month (7pm - 8:15pm EST). Those interested in joining a Support Group session are invited to register/email via the website.
When Covid restrictions are lifted, Support Group Sessions will resume, in-person, in Toronto, Ontario as well as online.
HS Heroes (HSH) is a volunteer-run, registered, Not-for-profit organization. We are a community and resource for people living with Hidradenitis Suppurativa (HS). HSH is dedicated to Education, Awareness, and Advocacy for;
- Those currently diagnosed
- Those who don’t yet have a diagnosis
- Those who don’t have the illness but are caregivers, friends, or relatives of those who suffer
- Health care professionals
Mamingwey Burn Society
The Mamingwey Burn Society Inc. assists burn survivors in the province of Manitoba in their life-long recovery following a burn injury. Our mission is to provide a safe and nurturing environment for survivors, their family members, friends and caregivers to come together to share their stories, offer support and learn from one another with the end goal of encouraging healing from the psychological aspects of their unique injuries. We hold annual educational gatherings, offer monthly support groups, and hold our annual “Go for the Burn” Run as a fundraiser and a way to promote fitness and health in our community.
Melanoma Network of Canada
Melanoma Network of Canada (MNC) was founded in 2009, to respond to the needs of melanoma and non-melanoma skin cancer patients in Canada. MNC is a National organization dedicated to coordinating education and prevention efforts, raising awareness, providing a strong voice for advocacy, and support services and programs for melanoma and non-melanoma skin cancer patients and caregivers. MNC works tirelessly to develop and implement programs and offer services to meet the needs of melanoma and non-melanoma skin cancer patients and their caregivers from initial diagnosis, through treatment and recovery, and in case of recurrence.
Patient Support group link: https://www.melanomanetwork.ca/supportgroups/
Monthly melanoma support group offered the first Wednesday of the month 6:30PM EST, registration is done online.
NEW Monthly Caregiver Support Group Link: https://www.melanomanetwork.ca/caregiversupport/ registration is done online.
French website: https://www.melanomanetwork.ca/fr/
Myositis Canada is a non-profit agency formed in 2015 by people with myositis who wanted an agency dedicated to improving the lives of people affected by myositis. Our mission is a world where each new case of myositis is diagnosed and cured within months, and where full rehabilitation from myositis damage is routine.
Neurofibromatosis Society of Ontario
Neurofibromatosis Ontario raises awareness and supports individuals living with neurofibromatosis (NF) in Ontario. We hold meetings and social events to bring individuals with NF and speakers from the medical community together. We provide a safe environment in person and virtually through social media to provide individuals with NF an opportunity to meet others with this condition and access information. Through donations received, we also fund NF research.
Save Your Skin Foundation
The Save Your Skin Foundation is a national not-for-profit organization dedicated to the areas of skin cancer and skin disease with a focus on education and awareness, research and program development, patient support, and ensuring equal and timely access to treatment for all Canadians. Please visit www.saveyourskin.ca for more information.
Scleroderma Association of B.C.
The Scleroderma Association of B.C. promotes patient outreach, support, and education as well as creates public awareness. We also continue to raise money for research locally and across Canada. www.sclerodermabc.ca
Scleroderma Canada serves as an advocate nationally for those affected by scleroderma and works collaboratively with regional scleroderma organizations and the international scleroderma community to achieve common objectives. We are committed to promoting public awareness, supporting those affected by Scleroderma and funding research to find a cure.
Scleroderma Manitoba advocates for the scleroderma community across the province and is committed to promoting disease awareness and improving the quality of life for all patients.
Scleroderma Society of Ontario
The Scleroderma Society of Ontario is committed to promoting increased public awareness, advancing patient wellness, and supporting research in scleroderma.
Stevens-Johnson Syndrome Canada
SJS Canada’s vision is to facilitate an umbrella of services for the SJS/TEN patient community in Canada, through health promotion by providing people suffering from Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis (SJS/TEN), their families, and caregivers with access to related counseling, education, support groups, and information programs
Tumour Foundation of BC
The Tumour Foundation of BC is a registered nonprofit charitable organization that has been supporting individuals and families affected with neurofibromatosis since 1984. Through our support, education, and research programs we strive to improve the lives of patients and families living with this genetic disorder.
Overview of Affiliate Membership
The CSPA collaborates with Canadian not-for-profit patient groups and organizations that deal with skin conditions, diseases and traumas. By working together, we can strongly advocate for the needs of skin patients across the country and provide comprehensive education and support.
Organizations or local support groups who join the CSPA benefit greatly by sharing information and having a wider audience. Skin patients and their families benefit by becoming part of a bigger community and gaining access to information about treatment, care, and research in skin disease.
How the CSPA supports Affiliate Members
Who are we, and what do we do?
We are the Canadian Skin Patient Alliance (CSPA) - a national not-for-profit organization dedicated to educating, supporting and advocating on behalf of all Canadians living with skin diseases, conditions, and traumas. Our mission is to promote skin health and improve the quality of life of Canadians living with disorders that affect skin, hair, and nails.
As an organization for all Canadian skin patients and the organizations that represent them, we:
- advocate for the needs of skin patients across the country
- educate patients, healthcare professionals, and policymakers by providing a broad range of resources and supports
- share cutting edge information that empowers our community to have informed discussions with their healthcare professionals and get the best possible health outcomes
- network and connect skin patients to emerging education, advocacy, and research opportunities.
Becoming an Affiliate Member
The CSPA is a national not-for-profit organization dedicated to educating, supporting and advocating on behalf of all Canadians living with skin diseases, conditions, and traumas. Our mission is to promote skin health and improve the quality of life of Canadians living with disorders that affect skin, hair, and nails.
Are you involved with a skin patient support group and would like your group to be part of the CSPA network? Large or small, every not-for-profit group that is patient-focused is welcome to join!
Application to become a CSPA Affiliate Member
A CSPA Affiliate Member is a federally or provincially incorporated not-for-profit organization or registered charity that exists to help Canadians deal with a skin condition, disease or trauma by providing support, education, information, undertaking or supporting fundraising, research, or advocacy on their behalf. The Board of the CSPA must agree with the submitted membership.
As a matter of policy, which is designed to maintain the CSPA’s good standing in the community, the CSPA invites only organizations that share its vision and its approach to carrying on its affairs. Of particular importance to the CSPA and its stakeholders are the following:
- Patient-focused programming and initiatives
- Fiscal responsibility/transparency
- Unbiased neutrality concerning recommendations for treatments for diseases (no direct advertising for sponsors’ products in any materials or websites)
- A functioning governance model with structured clinical advice from a relevant health-care professional or team
- The organization cannot be solely funded by a single commercial entity
Benefits of Being an Affiliate
Why become an Affiliate Member? What do you get by joining?
The CSPA can help you:
- Expand your reach
- Keep up-to-date on advances in skin disease treatments, care, and research
- Advocate for better care and more effective treatments
- Build connections with other skin patient organizations
A. Expand the reach of your organization
Your organization can benefit from having a stronger voice and having your information shared with a larger audience through CSPA’s digital and social media:
Canadian Skin & À Propeau magazines
Dermatologist of the Year
B. Keep up-to-date on advances in skin treatments, care, and research
Our website provides detailed information on the diagnosis and management of specific skin conditions as well as important information on coping and support and additional resources in English and French. There is currently information about approximately 40 conditions that have been reviewed for medical and scientific accuracy, which the CSPA is constantly expanding. As well, the CSPA provides educational resources about clinical practice guidelines, treatments and clinical trials.
Skin Investigation Network of Canada (SkIN Canada)
The CSPA is also leading patient engagement in the Skin Investigation Network of Canada (SkIN Canada). This Network was founded to support collaboration between leading researchers, experts and patients from across the country. SkIN Canada seeks to embed patient experience and input in skin research undertaken across Canada. In addition to being a member of the Executive Committee of the Network, the CSPA’s Executive Director chairs the Patient Advisory Council.
C. Advocate for better care and more effective treatments
There is strength in numbers! The CSPA supports Affiliate Members by:
- Advocating for access to specific treatments through patient input submissions, pre-budget submissions and on other important policy issues such as national pharmacare, drug pricing, drug shortages, teledermatology, phototherapy, and rare disease and cancer policy
- Supporting positive policy changes that impact patient input submission processes, such as changes to the Common Drug Review, the Pan-Canadian Oncology Drug Review run by the Canadian Agency for Drugs and Technologies in Health (CADTH)
- Participating in consultations and interactions with healthcare providers, policy- and decision-makers, and partners, including at meetings and conferences
- Engaging with policymakers to share the diversity of skin patient perspectives, and being a voice for those that feel they have no voice for their condition, and
- Sharing links to your surveys, campaigns, and consultations.
The Canadian Dermatology Association (CDA)
The CSPA shares updates about our community with dermatologists through the CDA eBulletin and is invited to participate at the CDA Annual Conference each June as the only patient organization. At this leading national event, we take the opportunity to showcase the work of our Affiliate Members by sharing your information with dermatologists and other leaders in dermatology at our booth.
Skin Patient Charter of Rights
In 2019, the CSPA created the Skin Patient Charter of Rights to raise awareness of your rights, to empower you and promote the fair treatment of all people with skin diseases, conditions and traumas.
D. Build connections with other skin patient organizations
Biennial Face-to-Face Affiliate Member meetings
CSPA hosts these all-expenses-paid meetings every two years. Attendees have the opportunity to discuss common issues facing skin patients in Canada and connect with pharmaceutical partners to enhance Affiliate Members’ networks. This allows our members to discuss common challenges faced by skin patients in Canada and offers an opportunity to identify areas where the skin patient community can work together to improve patient outcomes across disease areas.
Prior to the meetings, a survey will be circulated to help define priority issues for organizing workshops and discussions. In fact, the Skin Patient Charter of Rights grew from a discussion at one of these meetings.
Affiliate Members Workplace
The CSPA Affiliate Members Workplace is an online space where collaboration, conversation and information sharing can happen between CPSA's Affiliate Member organizations. All users are encouraged to offer resources and input as well as celebrate our successes and discuss how all Affiliate Members can better serve their respective skin patient communities. The platform looks and feels like Facebook. Complete with member profiles, groups and chat features, it is an effective, private way of communicating with one another. Our goal is to help empower our Affiliate Members to identify strengths and build camaraderie and connections between one another.
CSPA Affiliate Members' Workplace Confidentiality Agreement (click to view)
Affiliate Member Toolbox
The Affiliate Member Toolbox contains helpful information on working with the CSPA and includes resources from other groups, such as Charity Village.
CSPA Members discount
As an Affiliate Member, you can take advantage of and benefit from discounts with UPS, Avis, Budget, and Lenovo. It’s easy to apply!
Fostering patient communities & sharing information
Whether your organization is seeking to develop its Board of Directors, advocate, grow its social media presence, fundraise, make connections with other patient organizations, or develop itself into a new organization, CSPA can be a resource to you.
Coming Soon: Mentorship Program!
Stay tuned for news about the new Mentorship Program we are working on for our Affiliate Members.
What are Affiliate Members’ commitments?
There are no fees to join as an Affiliate Member. We ask our Affiliate Members to:
- put our “Proud Affiliate of CSPA” logo on your website
- permit us to share their logo on our website as an Affiliate Member
- share the Skin Patient Charter of Rights
- participate in relevant campaigns
- share information and surveys, and
- attend the face-to-face meeting.