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The Canadian Skin Patient Alliance (CSPA) has allocated funds to support upcoming outreach activities of our Affiliate Members. Eligible projects include but are not limited to websites, pamphlets, newsletters and endeavours that serve to raise visibility or awareness. The CSPA supports these initiatives as part of its mandate to raise awareness of skin diseases, conditions and traumas for all Canadians, and to assist organizations who can provide targeted support for specific needs and populations.

About Tanny Nadon: In 2016, the dermatology community mourned the loss of Tanny Nadon. She was an inaugural member of the CSPA Board of Directors and a founding member of the Alberta Society of Melanoma, which became an Affiliate Member of the CSPA. The CSPA Board is proud to name this grant in Tanny’s honour.

Application guidelines:

  • All CSPA Affiliate Members are eligible to apply for a Tanny Nadon Affiliate Grant.
  • Deadline for applications is by 5:00 p.m. EDT on April 1st and October 1st of each year (NB – there are two separate review cycles each year).
  • The maximum amount of any single grant will be $3,000.
  • CSPA will provide a maximum of $6,000 per calendar year for this program.
  • All applications will be assessed based on individual merit, though some priority will be given to applications from Affiliate Members who have not previously benefited from this program.
  • Affiliate Members who have benefited from this program can reapply 12 months following receipt of a grant.
  • The grants will be announced within 8-12 weeks following each deadline date.

Terms of receiving a CSPA Affiliate Grant:

  • Values and principles of the project must be in line with those of the CSPA.
  • Projects and initiatives must be in the future (exception: updates to website or documentation).
  • The project activities should not involve advertising or promotion of a specific product or company.
  • If treatment options are mentioned, they must be referred to as part of a drug class or type of product (vs. brand name), unless all brand names of a drug class are mentioned without bias.
  • There should be no recommendations for treatments, other than suggesting that readers consult a health care provider.
  • Where possible, outreach should be conducted in both official languages.
  • All aspects of the project should adhere to the highest ethical standards.
  • The winning organization must credit the CSPA as a financial supporter of the project.
  • Sign-off prior to launch or printing is required if any project materials or documents will include the CSPA logo.

For more information about the Tanny Nadon Affiliate Grant, please contact Diane Christin, Manager of Stakeholder Relations at: This email address is being protected from spambots. You need JavaScript enabled to view it. or 1-613-864-0745.

Past Winners:

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

 

A number of organizations work together with us to improve the lives of skin patients and their families in Canada. They are:

AboutFace

aboutfaceWe’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.

About Face Infographic


Alberta Lymphedema Association

Alberta Lymphedema IMAGEThe 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.

 

Alberta Lymphedema Infographic


Alberta Society of Melanoma

The Alberta Society of Melanomaasmlogo is an organization dedicated to educating the public regarding all forms of skin cancer, not just melanoma.  We also provide support and information to patients and families dealing with a skin cancer diagnosis. 

 

Alberta Society of Melanoma Infographic


Acne and Rosacea Society of Canada

Acne and Rosacea Society of Canada logo EngThe 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.

For in-depth information on acne please visit our website www.AcneAction.ca (bilingual). For information on rosacea, please see our www.RosaceaHelp.ca site.  

Acne and Rosacea Society Infographic


BC Lymphedema Association

The BC Lymphedema AssociationBC lymp 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

camp liberteCamp Liberté society provides Canadian children between the ages of 7 and 14 years who suffer with chronic skin conditions an opportunity to grow in confidence and self-esteem through a multi-cultural outdoor camping experience in a fun, safe, bilingual, environment.

 


Canadian Alopecia Areata Foundation

canaafOn 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 Alopecia Areata Foundation Infographic 


 Canadian Burn Survivors Community

cbsc

   www.canadianburnsurvivors.ca


Canadian Association for Porphyria

cap logo RGBThe 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 Association of Scarring Alopecias

CASA Fired Up is the Canadian Association of Scarring Alopecias. We are a support group that gives people with Cicatricial Alopecias a place to belong. Twitter handle: @Casafiredup

Canadian Association of Scarring Alopecias Infographic


Canadian Psoriasis Network

CPN Logo 150We 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 Foundationcanadian skin cancer logo 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.


DEBRA Canada

DEBRA Canada debraobjectives include patient programs, education, and the creation of awareness about this rare disorder.   DEBRA Canada is a voluntary, registered, non-profit organization dedicated to providing support for families affected by Epidermolysis Bullosa (EB) and to increasing Canadians' awareness of this challenging disease.   


Eczema Society of Canada

Eczema Society of Canada ESC LOGO TMMC15(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.

 

Eczema Society of Canada Infographic


Fire Fighters Burn Fund

ffbfThe 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

HS and Me logoHidradenitis & Me Support Group is a not-for-profit organization who facilitates monthly support group sessions via physically and virtually. Our mission is to promote self-care and awareness.

 


Melanoma Network of Canada

MNCThe Melanoma Network of Canada (MNC) provides support services, information and programs for individuals whose lives have been changed by melanoma. MNC provides the leading national voice for melanoma patients in Canada for better early detection and improved treatment access and works diligently to prevent more Canadians from developing melanoma through public awareness and youth and adult education on sun safety.  Charitable Registration number: 854913050RR0001

Melanoma Network of Canada Infographic 


Myositis Canada

myositisMyositis 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.

Myositis describes inflammation or swelling of the muscle tissue. Dermatomyositis includes inflammation of the muscles and the skin. DM is the easiest type of myositis to diagnose because it typically has a visible skin rash caused by inflammation of blood vessels under the skin. The DM rash looks patchy and reddish or purple and is found on the eyelids, elbows, knees and knuckles. Additional rashes may occur on the cheeks, nose, back and upper chest. Some people also have calcinosis, hardened little bumps under the skin. There is a sub-type of DM where the person affected only suffers from inflammation of the skin with no muscle involvement. 
 

Neurofibromatosis Society of Ontario

Neurofibromatosis OntarioNFONLogo 4C 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

SYSF Logo Eng Fre CMYKThe 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.

Logo BC pngThe Scleroderma Association of B.C. promotes patient outreach, support and education as well as create public awareness.  We also continue to raise money for research locally and across Canada. www.sclerodermabc.ca


Scleroderma Canada 

SSC logoScleroderma 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

scleroderma manitobaScleroderma 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 5654c7f1461fdSSO Logo 2015is committed to promoting increased public awareness, advancing patient wellness and supporting research in scleroderma.


Stevens-Johnson Syndrome Canada

SJS Canada’ssjs tens 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 counselling, education, support groups and information programs

 

Overview of Affiliate Membership

The CSPA serves as an umbrella organization for 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 umbrella 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.

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

If your group would like to join the CSPA as an Affiliate Member, please read the following section on requirements, and request the application form at This email address is being protected from spambots. You need JavaScript enabled to view it.. We will get back to you as soon as possible. Contact Diane Christin, Manager Stakeholder Relations at This email address is being protected from spambots. You need JavaScript enabled to view it. if you have any questions or would like more information about the benefits of having your organization become an Affiliate Member of the Canadian Skin Patient Alliance.

Requirements

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
  • Transparency
  • 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

Please request an application to become a CSPA Affiliate Member at This email address is being protected from spambots. You need JavaScript enabled to view it..

 

 


Why become an Affiliate Member? What do you get by joining?

The CSPA can help you:

  1. Expand your reach
  2. Keep up-to-date on advances in skin disease treatments, care, and research
  3. Advocate for better care and more effective treatments
  4. Build connections with other skin patient organizations

If you would like to join CSPA as an Affiliate Member, please contact us at This email address is being protected from spambots. You need JavaScript enabled to view it.. We would be happy to provide you with the application form. To see the current Affiliate Members please go to https://www.canadianskin.ca/affiliate-members/current-affiliate-members

If you have any questions, please contact us by phone at 613-224-4266; toll-free at 1-877-505-2772; or by email at This email address is being protected from spambots. You need JavaScript enabled to view it..

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:

 cspa logo bilingual 550px

www.canadianskin.ca

facebook         instagram          twitter 

@CanadianSkin

Tanny Nadon Affiliate Members Grant

You are eligible to apply for a $3,000 grant every October and April to use as you require. This grant can be used for various things like updating your website, creating an educational resource, or attending or hosting a meeting.

Canadian Skin & À Propeau magazines

Canadian Skin Spring2020 Eng smThese free magazines are published three times per year and contain up-to-date information on the diagnosis, treatment, and management of skin disorders as well as helpful resources for patients in your community. The magazines are available in dermatologists’ offices across Canada as well as by mail directly to patients, their families, and other interested readers. Affiliate Members are automatically added to the magazine distribution list. You can have your name added to the distribution list now by subscribing, calling 1-877-505-CSPA (2772) or emailing This email address is being protected from spambots. You need JavaScript enabled to view it..

 fall cover 2019 englishThe magazines include a section that features the work and experiences of our Affiliate Members, called “Living With”. You are invited to submit an article about the impact of a specific skin disorder on a patient from your community and how they navigated treatment decisions for inclusion in the “Living With” section. Please contact This email address is being protected from spambots. You need JavaScript enabled to view it. for further details.

 

Dermatologist of the Year

We also announce and present the prestigious Dermatologist of the Year award at the Canadian Dermatology Conference Annual Conference. The nominations for this award are submitted by all Affiliate Members and the winner is vetted through a committee. For further information, please contact Diane Christin at This email address is being protected from spambots. You need JavaScript enabled to view it..

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 36 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.

As an Affiliate Member, you have free access to the Skin Patient Charter posters, postcards and banners to use at meetings and events. Email This email address is being protected from spambots. You need JavaScript enabled to view it. today for a free copy of the Skin Patient Charter.

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.

eBulletins

You will receive a monthly eBulletin containing useful resources and information on policy developments of interest to skin patients and their supporters. We can also share your information with other Affiliate Members.

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.

 

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