Principles of Working with the Pharmaceutical Industry
The CSPA is proud to work with a variety of funders, all with the goal to improve the quality of life for Canadians living with skin diseases, conditions and traumas. This includes many pharmaceutical companies that play the crucial role of bringing new treatments for dermatological conditions to the market.
Recognizing the value that pharmaceuticals bring to skin patients and to avoid conflicts of interest, the CSPA follows guiding principles with regards to interactions with the pharmaceutical industry:
The CSPA welcomes the opportunity to partner with pharmaceutical companies, with honesty, transparency and accountability at the core of all relationships.
- We will always put the best interests of people living with skin diseases, conditions and traumas first.
- The CSPA will be transparent about its relationship(s) with pharmaceutical companies to all stakeholders and list all funders on our website.
- We believe that patients should be informed about all treatment options and will endeavour to do so, but we will not endorse any specific medication or course of treatment.
- The CSPA will accept funds from pharmaceutical companies provided that there is an agreement about the nature of the funding and that the CSPA owns any and all intellectual property. The company will not influence directly or indirectly any content or communications as a result of the funding.
The Canadian Skin Patient Alliance recognizes the important contribution of all of its sponsors. However, this is in no way an endorsement of any product or treatment. The CSPA is solely responsible for all content in our publications and online.
The CSPA fully endorses the Canadian Consensus Framework for Ethical Collaboration developed by Innovative Medicines Canada in collaboration with the Health Charities Coalition of Canada, Best Medicines Coalition, the Canadian Medical Association, the Canadian Nurses Association and the Canadian Pharmacists Association.
Commemorating 10 years of the Canadian Skin Patient Alliance
Since its creation in 2007, the Canadian Skin Patient Alliance (CSPA) has worked to promote skin health and improve the quality of life of Canadians living with dermatological conditions. Throughout its successful history, the CSPA has been 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.
Before the CSPA was created, Canadian skin patients were not represented by a single coalition. This made it exceedingly difficult for them to express their concerns, educate the public or advocate for change. The CSPA was intended to address that need, and with assistance from partners such as the Canadian Dermatology Industry Association (CDIA) and the Canadian Dermatology Association (CDA), it has worked to establish itself as an organization for all skin patients across Canada.
The early focus of the CSPA was much the same as it is now: information, education and advocacy. Through its website and projects such as its award-winning Canadian Skin magazine, the CSPA has worked to ensure that skin patients, their families and caregivers have access to the latest information on skin, nail and hair health. For years, however, the CSPA heard that patients were frustrated by a number of issues, including limited access to drugs, dermatologists and treatment options. It was the ground-breaking Skin Deep: A Report Card on Access to Dermatologic Treatments and Care in Canada (2012) that allowed the CSPA to advocate more effectively for skin patients and increase its credibility in the eyes of sponsors, government and physicians. The report provided a snapshot of dermatology in Canada in a meaningful, quantifiable way, establishing a platform for the CSPA to use in its work of ensuring that the specific issues facing skin patients in each province and territory received the attention that they deserved.
The CSPA has also worked hard to bring together the not-for-profit patient groups and organizations that deal with specific skin conditions and diseases. Together with its Affiliate Members, it has helped give the skin patient community a stronger, more unified voice, particularly through events such as the 2012 Skin Matters Conference and the 2015 International Dermatology Patient Organization Conference (IDPOC).
Moving forward, the CSPA remains committed to representing, educating and supporting Canadians who are living with skin diseases, conditions and traumas. Its accomplishments through its first 10 years have established a strong foundation for its continued success, and with the publication of its first-ever strategic plan in 2017, it will be prepared for another transformative decade.
CSPA's Strategic Plan on a Page
(Click image to enlarge)
10th Anniversary Sponsors
The CSPA is grateful for the support of our special 10th Anniversary Sponsors;
Medical Advisory Board
The CSPA is proud to have some of Canada's most experienced and respected dermatologists sit as members of our Medical Advisory Board. This Board serves to review all medical content prior to publishing, be it on this website, in our award-winning Canadian Skin Magazine, or in individual responses to patients. They are also available to provide input into CSPA's overall strategies, including special projects
Our Current Medical Advisory Board is
|Dr. Gordon Searles, Chair||Dr. Charles Lynde|
|Dr. Kirk Barber||Dr. Danielle Marcoux|
|Dr. Marc Bourcier||Dr. Jaggi Rao|
|Dr. Isabelle Delorme||Dr. Cheryl Rosen|
|Dr. Anatoli Frieman||Dr. Jack Toole|
|Dr. Nicole Hawkins|
CSPA Dermatologist of the Year
The “Derm of the Year” award is the highest honour bestowed by the CSPA on one exceptional dermatologist each year. The glass award & gold pin are presented at the Canadian Dermatology Association’s (CDA) annual conference in recognition of contributions made the previous calendar year. Furthermore, the winner is featured on the outside back cover of the fall/winter issue of the Canadian Skin magazine.
In order to be considered for the award the dermatologist must demonstrate:
- They have compassionate concern for the welfare and happiness of patients
- They are committed to community service that parallels their involvement in quality patient care.
- They have a positive effect on others.
- They have exhibited & performed outstanding patient care.
The CSPA is proud to announce Dr. Jerry Tan as our Dermatologist of the year for 2018.
Dr. Tan is an exeptional dermatologist who has compassionate concern for the welfare of his patients. He is a world class researcher and has shown a strong commitment to community service. Thank you Dr. Tan for everything you do for skin patients in Canada.
The following are past recipients of the Dermatologist of the Year:
|2017||Dr. Isabelle Delorme|
|2016||Dr. Neil Shear|
|2015||Dr. Jeff Donovan|
|2014||Dr. Charles Lynde|
|2013||Dr. Marc Bourcier|
|2012||Dr. Jan Dutz|
|2011||Dr. Gordon Searles|
|2010||Dr. Harvey Lui|
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.
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.
Board of Directors
The CSPA Board of Directors is composed of patients, skin-health professionals, educators, and members of industry. The group meets face-to-face once a year at the Annual General Meeting and has regular conference calls throughout the year. Board members are elected and serve a two-year term.
The board, which has representation from across Canada, sets the mandate for the organization and oversees staff to ensure financial and human resources are allocated appropriately to best serve Canadian skin patients.
The current Board of Directors:
Sandy Burton, Ontario
Sandy was diagnosed with Rare Skin Disease (Darier's) at 3 years old. She has experienced many flareups and experimental medications but feels she is a survivor. She has an amazing Dermatologist and his Mother before him (Dr.Rikki Schachter and Dr,Dan Schachter) who she is so thankful to. She is honoured to be a Director on CSPA Board and is proud to be a voice in helping people with skin conditions.
Christine Butler, Newfoundland and Labrador
Christine is a retired public servant who now serves as a municipal councillor in her hometown of Conception Bay South. She is a board member with the Conception Bay Family Resource Centre. She is a Big Sister and a community volunteer, but her favourite role by far is being Nanny Christine.
Christine was born with a rare skin disease called recessive congenital ichthyosis erythroderma (CIE). When she was officially diagnosed at age 21 she started on the road of learning all things ichthyosis. She says “I don’t know that I can say I was happy to be born with this rare skin disease called recessive CIE, but I do know I can say that having this disease has made me strong, has made me do things that I might not have otherwise, has made me reach and go beyond goals I might not have otherwise. I have grown to be a confident woman who has had many achievements; in family, work and the community”.
Through social media, Christine shares her story around the world, as do many others. This forum provides support to each other. Patient support is key to understanding their needs; whether it’s skincare, medications and creams, challenges and frustrations, or just a safe, comfortable place to share all things ichthyosis. These needs would be the same for any person with any skin condition or disease. She is presently organizing a future patient forum with the help of her social media friends.
Christine is excited to be part of the CSPA and looks forward to bringing the 2017-2022 Strategic Plan to life!
Ivan Eggers, British Columbia
Ivan moved to Canada from South Africa. He is passionate Project Manager and Business Analyst with 20+ years of experience leading projects in healthcare, manufacturing and entertainment. Ivan is currently the Vice-President of Operations at Resonance Software (WorkSight). Ivan holds a Bachelor of Commerce in Information Systems and a Masters of Business Administration. Certifications in Certified Business Analyst (CBAP)' and Project Management Professional (PMP).
Jeff Losch, Alberta
Jeff is a lawyer and business executive and a graduate of McGill University and Queen’s University. He has extensive governance experience having served as corporate secretary to numerous companies including dual listed, cross border public entities.
Jeff was diagnosed with psoriasis over 20 years ago. He has participated in clinical trials for biologic and biosimilar psoriatic treatments and welcomes the opportunity to apply his personal experiences to advocate for individuals with dermatological conditions.
Felix Kongyuy, British Columbia
Felix is a non-profit and electoral policy consultant. He brings decades of experience in social services and business sector combined to CSPA. In the past years, Felix has co-founded three community organizations and he understands the need for partnership, inclusive leadership, and empowerment in board governance. He lives in British Columbia and has developed numerous services for Newcomers, Immigrants, Canadians, and Small businesses. As a community organizer, Felix has a Diploma in human services, Bachelor Degree in Business Administration and Master in Electoral Policy and Administration. He is seeking new challenges and has a strong compassion for helping, fundraising, advocating, mediating and solving conflicts.
Munish Mohan, Ontario (Chair)
Drawing on his key leadership roles in sales, marketing and commercial opps, Munish brings a business and team perspective that complements the organization’s health perspective when guiding CSPA’s strategic oversight by the Board. Munish’s professional career spans across pharmaceutical, healthcare and CPG industries. Munish is also a caregiver of a family member with a skin disease. He joined the board of CSPA to bring his leadership skills and help elevate health outcomes and quality of life for all skin patients.
Shiamala Paramasivam, Ontario
Shiamala Paramasivam, PMP® is currently pursuing her MBA and has a background in project management, finance and health sciences. In her leisure time, Shiamala enjoys traveling and photography.
Hansi Peiris, Quebec
Hansi Peiris is a Clinical Research Coordinator from Montreal, Quebec with a B.Sc. in Psychology from McGill University. She is passionate about dermatological research and advocating for skin patients. Hansi wishes to pursue her higher education to further advance clinical trial research while continuing to promote and protect the health of skin patients from across the globe.
Julie Powers, Ontario
Julie Powers has her Post Graduate Diploma in Event Management, and currently is the Director of Member Relations and Events for a Private Fishing Club in Mt. Albert, Ontario. She is a co-founder of The Canadian Alopecia Areata Foundation, CANAAF, which has grown from a small group picnic in a park, to an organization with successful independence. When not volunteering on the CANAAF Board, or participating and facilitating the annual conference, she enjoys being with her 2 teenagers and her stubborn but loveable French bulldog.
Audrey Santo Domingo, CPA, CMA, Ontario
Audrey has held finance roles across various industries including financial services, healthcare, consumer packaged goods and retail. Her expertise is in managing the strategic planning and implementation processes, along with annual budgets and forecasts for organizations.
Audrey currently works as a Global Finance Director for BGRS which is one of the largest relocation companies servicing Fortune 500 clients globally. At BGRS, she is considered a key leader who manages a team of 6 strategic finance partners that help drive the organization towards its vision and goals. Having a deep self-awareness along with balancing Business and People Leadership skills are key attributes for her as a strong global leader. Her recent achievements include the managing a P&L (profit & loss statement) that has doubled in EBITDA over two years. Being seen as a strategic business partner and with key P&L accomplishments, she is also involved in M&A activity along with long term planning and execution.
Audrey’s leadership, bias for action and her natural strength and experience in finance positions enable her to add value as a member of the Executive Committee on the CSPA Board of Directors.
Marianne Welsh, Nova Scotia
Marianne Welsh is an industrial relations professional, former teacher and researcher, and has also worked in community mental health. She holds degrees from Mount Allison University and Memorial University of Newfoundland. She has lived with Chronic Spontaneous Urticaria since the age of twelve although she didn’t receive a diagnosis until 1999. In her case, the condition is severe and refractory. Marianne lives in beautiful Dartmouth, Nova Scotia with her husband and their two cats. Areas of interest include advocacy and patient education.
Executive Committee: Julie Powers, Munish Mohan, Hansi Peiris, Audrey Santo Domingo