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February is Rare Disease & Black History Month. February 28th. is Rare Disease Day. February – A Rare Disease Month, Awareness, Advocacy, and Action Read more February – Black History Month Read more Together, We Are Stronger ! SJS Rare Disease & Black History Month are not just about information—it’s about community, compassion, and action. Whether you're a survivor, caregiver, healthcare professional, or supporter, your voice. Let's build a strong community and healthy community together, no matter the color of your skin. SJS promotes equity for everyone.

Read More About Our Team Anchor 1 Anchor 2 Sonia Whyte-Croasdaile Founder / President Sonia Whyte-Croasdaile RPN, RSW, is a wife, mother, nurse, Registered Social Worker, trained Relaxation/Life Coach, and the Founder and President of Stevens-Johnson Syndrome Canada. She is experienced in community-based work, support group development and facilitation, and couples, individual, and group counselling. Like many other professionals, Sonia aspired to maintain her professional career of over 25 years until she was ready for retirement. However, in 2011, she battled and survived Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis (SJS/TEN), a debilitating skin condition that has since completely transformed and rearranged her life. For approximately six weeks in 2011, Sonia fought for her life in the Intensive Care Unit and Burn Unit alike in the hospital. After being discharged from the hospital, she stated that she felt like she had become a stranger to her own body. The body she once knew was now unrecognizable and painfully falling apart due to the burning of her skin and other membranes because of the disease. Sonia desperately and passionately searched for community resources to support her challenging recovery journey but found none. She realized then that community support for patients like her was non-existent in Canada. Having survived this life-changing ordeal, it has become her mission to create a Canadian-based organization to assist others on their journey with SJS/TEN. To fill that void, Sonia founded Stevens-Johnson Syndrome Canada with the help of her supportive family, friends, and medical experts in the field. Sonia Whyte-Croasdaile frequently shares her story with the medical fraternity as well as and the general community to inspire hope, bring awareness, educate, and support within and outside of the SJS/TEN patient community. Through her efforts, the organization has reached and supported numerous individuals from all over the world. Her primary goal is to help this organization improve the lives of those affected by Stevens-Johnson Syndrome. Please join us in supporting the cause of SJS Canada in its fight to bring awareness to and possible find a cure to this life-threatening disease, through your generous monetary donation, or offering your time to help the organization in its efforts to spread the word, solicits funds, or in any other way you can. Frank Linhart (Jr) Financial Officer Frank has been a qualified accountant (CMA, CPA) since 1992. He has been a Vice-President of Finance, Director of Finance & Corporate Controller in several industries including the Marketing Industry, Retail, Telephone Analytics, and the Gambling sector. He joined the SJS/TEN Board of Directors in 2017 to assist with their financial goals of becoming the leading advocate for SJS/TEN in Canada. Frank’s passion is the mentoring of young financial accountants and giving back to the community through his many charities. He is President of the Halton-Peel CPA Ontario Association, Treasurer of SJS/TEN Canada, Treasurer of Oakville Meals on Wheels and a volunteer Tax Preparer for the Region of Peel. Sanjay Kumar Co-Chair Strategic & External Lead Sanjay Kumar is a Sariel Entpreneure. His expertise includes Digital Marketing, IT Consulting Services, and Managing cross-functional teams. Sanjay helps enterprises simplify their operations, modernize legacy systems, and automate manual processes through his transformative technology solutions. Sanjay is originally from India and relocated to Canada in 2021. His educational qualifications include a Masters in Computer Science and a Masters in Business Administration (Finance). Sanjay has a friend in India who suffers from Stevens-Johnson Syndrome. Even today, the friend doesn't have any community support and there is almost no awareness about this rare disease in India. Through his association with SJS Canada, Sanjay wants to support as many survivors as possible. Coleen Lambert Member at Large Coleen Lambert is a licenced Financial Broker and Coach. Prior to building her own Financial Services and Financial Coaching company in 2020, Coleen worked as a Legal Professional for more than 16 years in various areas of law such as: Real Estate, Labour and Employment, Corporate Commercial, Litigation, Oil and Gas, etc. Her knowledge and experience, expertise in presentations, administration and connection to the legal community have brought in a generous donation, strengthened the awareness in other industries, and helped with the visuals for community presentations and network fundraising. Coleen is a current Board Member with Stevens-Johnson Syndrome Canada and has held the role with the charity since 2018. Coleen has strong perspective of the early signs of Stevens-Johnson Syndrome and TEN (SJS/TEN) and the after affects because a close family member of hers is a survivor of SJS/TEN. Coleen is committed to the aim, mission and vision of Stevens-Johnson Syndrome Canada to “Promote health by providing people suffering from SJS/TEN as well as their families and caregivers with access to related counselling, support groups and information programs.” “To advance education by providing workshops, forums and seminars about the SJS/TEN to the public and medical professionals.” “To facilitate an umbrella of services for the SJS/TEN patient community in Canada.” Jeremy Falk Patient Representative My name is Jeremy Falk and I live in Los Angeles. In 2005 I had a bacteria staph infection. After taking two weeks of a 21-day supply of Bactrim (a Sulfa-based antibiotic), my eyes and throat started to feel inflamed and irritated. I went to the hospital and was told I had an eye infection and was giving sulfa eye drops in addition to the oral sulfa antibiotics that I was already taking. Later that day I developed bumps on my body, my face began to swell and the skin around my face started peeling and flaking. I took a picture and sent it to my dad and brother. My brother’s pharmacist friend told him I was having a severe allergic reaction while my dad and I read up on the possible side effects of Bactrim. Everyone agreed I need to go to the ER now. By the time I was admitted to the hospital, my eyes were swelled shut, my skin was peeling and raw from my scalp to torso. During my 13-day week stay in a quarantined hospital room, they stitched amniotic membrane to underside of my eyes lids in the hopes that I would not lose my vision. My family took me home and helped me recover. After one month without sight, they removed the stitches from my eyes and I was able to see, thank goodness. However, my tear ducts no longer worked and I could barely open my eyes. They were extremely photosensitive and dry. Years later In 2012, while working with the incredible team at USC Roski Eye Institute in Los Angeles I met Dr. Gloria Chiu. Dr Chiu specializes in caring for patients with extreme eye conditions, like my SJS-effected eyes. She introduced me to PROSE contacts, and that changed everything for my eyes and me. These custom-made prosthetic lenses allowed me to open my eyes more and drastically reduced the photosensitivity. PROSE also helps to decrease the irritation and redness of my eyes. In 2020 I began the process of cataract surgery in both eyes. The healing process has proven to be tricky due to the dryness of my eyes. I am still healing due to accidental scratches during healing. Other than my cataract surgery woes I am in good shape. Although my nailbeds are damaged and fragile from SJS and my finger nails don’t work very well, I am very grateful that I’m healthy and was able to resume my full life of continuing my career as an Apple Consultant, running regularly (including two marathons), and all the travel and activities I enjoy and love, including attending Burning Man! In June 2020, I found and joined the SJS Canada group and have been delighted by the support that the group provides for each other. Sonia’s care and attention to the members of this group is greatly appreciated, her leadership has helped gain awareness and momentum for the SJS community. It has been a pleasure to be a part of this group. Thank you. Dr. Bruce Carleton PharmD, FCP, FISPE Professor and Chair Division of Translational Therapeutics, Department of Pediatrics Faculty of Medicine University of British Columbia Director Pharmaceutical Outcomes Programme BC Children’s Hospital Senior Clinician Scientist BC Children’s Hospital Research Institute Vancouver Dr. Bruce Carleton has over 30 years of experience in clinical pharmacology and investigating the safety and effectiveness of drugs used in both children and adults. He is the founder and CEO of the Canadian Pharmacogenomics Network for Drug Safety (CPNDS), established in 2004 and based in Vancouver, BC. One of the overarching goals of the CPNDS is to prevent adverse drug reactions (ADRs) by identifying predictive genomic markers for specific ADRs through active surveillance. These markers are incorporated into diagnostic tools used to predict and prevent ADRs through specific dosing and alternative therapeutic recommendations for commonly used drugs. The CPNDS has established extensive collaborations within the province of BC, across Canada and internationally, to conduct patient-oriented research and disseminate findings to help patients. One of the specific areas, where Dr. Carleton is a recognized leader whose scientific accomplishments have been acknowledged internationally, is in Severe Cutaneous Adverse Reactions (SCAR). His work has identified genetic variants that cause a variety of ADRs including carbamazepine-induced hypersensitivity reactions e.g., Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN), phenytoin-induced maculopapular exanthema, and the development of clinical practice guidelines for predictive pharmacogenetic testing. In 2017, Dr. Carleton was invited and asked to speak at the SJS/TEN 2017: Building Multidisciplinary Networks to Drive Science and Translation Meeting, the second in a series of biennial meetings of experts to take place in North America. Dr. Carleton also hosted and chaired the organizing committee for the SJS/TEN 2019: From Science to Translation Meeting which successfully engaged 164 participants, including 43 SJS/TEN patients and their families from six continents. Establishing international network meetings is a significant component in advancing the science to understand these rare, severe ADRs as well as showcasing the latest innovations for treating SJS/TEN. Attendees are then able to further enhance the support systems and technologies to improve care for patients. Dr. Carleton continued his involvement and participation at the SJS/TEN 2021: Collaboration, Innovation and Community Meeting held virtually during the COVID-19 pandemic. Dr. Carleton is currently investigating genomic causes of antibiotic-induced severe cutaneous adverse reactions in pediatric and adult patients, as well as common genetic traits for all drug-induced serious cutaneous adverse reactions. Dr. Elizabeth J. Phillips MD, FRCPC, FRACP, FIDSA, FAAAAI Professor of Medicine, Dermatology, Pathology, Microbiology, and Immunology John A. Oates Chair in Clinical Research Director, Center for Drug Safety and Immunology Director, Personalized Immunology, John A. Oates Institute for Experimental Therapeutics Vanderbilt University Medical Center Professor of Pharmacology Vanderbilt University School of Medicine Dr. Elizabeth Phillips is a physician-scientist clinically trained in infectious diseases, immunology, and clinical pharmacology who has established new clinical and research programs in drug hypersensitivity, pharmacogenomics, and personalized immunology across different healthcare systems. She has published over 350 peer-reviewed articles and book chapters on hypersensitivity reactions to drugs and vaccines. For over 25 years, Dr. Phillips has led research programs in Stevens-Johnson syndrome/toxic epidermal necrolysis (SJS/TEN) and other severe immune-mediated adverse drug reactions across different medical systems. She is recognized for elucidating mechanisms and genetic determinants of drug hypersensitivity, which have transformed research, clinical practice, and training in the United States and internationally. Her discovery through a translation pipeline continues to pioneer strategies to prevent, diagnose, and mitigate harm from true drug hypersensitivity. She is also applying novel technologies to understand the single-cell pathology of drug hypersensitivity at the site of tissue damage, leading to the identification of new therapeutic targets. Additionally, Dr. Phillips is a principal investigator on National Institutes of Health (NIH) funded research to define genetic and other markers that can lead to the prediction, prevention, and earlier diagnosis of SCARs, including the North American Therapeutics In Epidermal Necrolysis Syndrome (NATIENS) study to determine the most effective treatment for SJS/TEN. Dr. Phillips has also led the development of clinical guidance and practices related to the care of drug hypersensitivity in patients. She presently dedicates her clinical outpatient practice to drug hypersensitivity at VUMC and her clinics have acted as a model for others within the United States and abroad, and her efforts have transformed care across multiple disciplines. An additional passion of Dr. Phillips is advocating for members of the community with severe cutaneous adverse drug reactions and working alongside patients and foundations to advance education, awareness, and science of drug hypersensitivity. She founded and led SJS/TEN 2017, 2019, 2021, and 2023 meetings and the DRESS 2022 meeting to unite science with the community. These meetings have provided a diversity of scientific information to an international audience. The SJS/TEN 2023 meeting, for example, drew an overall attendance of 428 individuals from 57 countries, including 72 representatives of the SJS/TEN community and 356 members of the scientific community. Dr. Michele Ramien MDCM, FRCPC, DABD (Pediatric Dermatology) Clinical Associate Professor, University of Calgary Dr. Ramien is a hospital-based academic dermatologist at the Alberta Children’s Hospital who is board-certified in both Canada and the United States. A first-generation Canadian, half Chinese-Tibetan and half German, her family's hard work and perseverance helped to shape her values and ambitions. She maintains both pediatric and general dermatology practices, with a focus on teaching and mentoring the next generations and fostering global communities that share her passion for dermatology, excellent and equitable patient care, and innovation. Early on in her practice, Dr. Ramien encountered a patient with recalcitrant recurrent RIME. This patient and family inspired the work she has done with a dynamic group of Pediatric Dermatology Research Alliance collaborators to propose pediatric-specific definitions for blistering skin conditions and to work on translating medical knowledge into practical solutions for SJS survivors. Dr. Ramien volunteers with many dermatology associations including on the board of directors for Camp Liberte, a fully-funded summer camp for Canadian children with SJS and other skin diseases that is supported by personal and industry donors. Sonia Bromfield-Cornish RPh, PharmD, BCGP, CDE, IV Board Member Sonia Bromfield-Cornish has been a practicing pharmacist for over 25 years, working across various sectors of the industry, including Community Pharmacy, Hospital Pharmacy, Compounding Pharmacy, and currently serving as the Designated Manager and Senior Operations Manager for a Long-term Care/Geriatrics Pharmacy in Ontario, Canada. She is a Board-Certified Geriatric Pharmacist (BCGP) and a Certified Diabetes Educator (CDE). In addition, she holds a Doctor of Pharmacy degree from the University of Florida and is a Registered Pharmacist in Ontario. As a pharmacist, Sonia possesses advanced knowledge of SJS and has chosen to volunteer with this organization to support the founder and president of SJS Canada and SJS/TEN community. Sonia's primary objectives are to raise awareness among the public and to provide support to the survivors and families affected by SJS/TEN. Dr. Karen Worthy PhD, MPH, RN, CNE, CNE cl Co-Chair – Governance & Operations Lead Dr. Karen Worthy is a Professor at the University of South Carolina College of Nursing. Dr. Worthy has a 28-year history in professional nursing and has been a nurse educator for 19 years. She received an ADN, BSN, MSN, MPH, a Graduate Certificate in Leadership Studies, and a PhD in Higher Education Administration—all five degrees from the University of South Carolina. Her research interests include health equity, social justice advocacy, underrepresented student populations, and simulation methodologies. Dr. Worthy is a Certified Nurse Educator, Certified Academic Clinical Nurse Educator, Sigma Alpha Xi Chapter Immediate Past President and Director of Student Engagement, Sigma Region 7 Coordinator for over 48 Chapters, and Midlands Black Nurses Association Bylaws Committee and Health Policy Chair. Dr. Worthy is an Adjunct Facilitator for the Harvard Center for Medical Simulation (CMS) Debriefing Skills Workshop, a contributing author to several books on simulation certification review and conceptual learning, and recently served as a member of the South Carolina Advisory Committee on Nursing Education. Dr. Worthy is also dedicated to advancing global nursing education and creating transformative learning experiences that support student growth and cultural understanding. She recently delivered the keynote presentation on simulation to over 500 students, faculty, staff, and administrators at the Lagos University Teaching Hospital (LUTH) College of Nursing Sciences in Lagos, Nigeria. She has engaged with international nursing education and culture in Central America, France, Germany, Italy, Spain, and the United Kingdom. Dr. Worthy’s selected awards and recognitions include the South Carolina Nurses Association’s Daisy Award for Health Equity (2025), USC CON Outstanding Equity and Justice Inquiry Award (2025), Outstanding Clinical Scholar Award (2025), Sigma Region 7 Star Performance (2025), Innovation Award (2024), Diversity in Nursing Leadership Fellowship (2024), Community Engagement Award (2023 & 2017), Outstanding Equity and Justice Advocacy (2022), and USC Clinical Practice Teaching Award (2018). Vincent Cornish Vincent Cornish, FICB. Vincent is a “Fellow of the Institute of Canadian Bankers”; he obtained his FICB designation through extensive studies at: York University, TMU (Toronto Metropolitan University – formally Ryerson University) and Queens University, Kingston Ontario. He is a former Assistant Vice President of Bank of America Canada where he served in various managerial roles over 36 years of employment. Vincent has been recently certified as a Chaplain with the Canadian International Chaplaincy Association and received his Badge of Honor. He is equipped to perform Chaplaincy duties to individuals/groups in: schools, colleges, universities, hospitals etc. Stevens - Johnson syndrome almost took the life of his sister. Through his sister’s diagnosis, treatment, survival and after effects, Vincent learned of this rare disease and joined the Advisory Committee to help provide advice on the accomplishment of the organizational aim and knowledge on the nature of Stevens - Johnson syndrome and the health care it needs. Lorna Baker Lorna has been a Registered Nurse since 1996 and served as a Community Health Nurse from 1997 to 2010. Following this, she held the position of Certified Diabetes Educator at Unison Health and Community Services from 2010 to 2017. Since 2013, Lorna has been the Hub and Satellite Manager at Unison Health and Community Services. In 2017, she founded and presided over the Resiliency Club Foundation. Demonstrating continued dedication, Lorna became the Owner/CEO of Phoenix Health/Home Care Services in 2023. Phatay Waraich Phatay is a Vendor Manager with TD Bank within the technology team. He has had various roles within the financial industry from procurement and third party risk management to vendor management. Prior to working within the financial sector, he started his career within procurement in the pharmaceutical industry specifically in assisting in procurement for pharmacies and patients. He joined the board to help the organization improve the lives of those affected by Stevens-Johnson Syndrome along with building awareness for the public. Phatay is also a board member for Community Living Ajax, Pickering and Whitby

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Events Calendar April 2026 Today Mon Tue Wed Thu Fri Sat Sun 30 31 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 3:30 PM SJSC Support Group 16 17 18 19 20 7:15 PM Annual General Meeting (AGM) 2026 21 22 23 24 25 26 27 28 29 30 1 2 3 4 5 6 7 8 9 10

Volunteer CONSIDER BECOMING A PART OF OUR VOLUNTEER TEAM TODAY. Our volunteers are exceptional. SJS Canada is very thankful for the great work that our volunteers do. Without volunteers, we could not exist. We always seek volunteers to join our team and help us bring awareness to this deadly disease. Volunteer Application Showing Appreciation to Our Volunteers MAY 2019 Showing Appreciation to Our Volunteers MAY 2018

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What's SJS? What is Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) SJS is a rare, severe skin condition brought on by an adverse reaction to a medication. Countless drugs can precipitate SJS, but the most common medications include non-steroidal anti-inflammatory drugs (e.g. ibuprofen), antibiotics (e.g. penicillins), anticonvulsants (e.g. phenytoin), and allopurinol. SJS can affect anyone taking medications but typically targets those under the age of 30. SJS starts with flu-like symptoms and is followed by a painful rash that spreads over the body, blisters, and peels. SJS and TEN are differentiated by the proportion affecting the entire body. When less than 10% of the entire body is involved, it is recognized as SJS; over 30% is called TEN. Without an early diagnosis, SJS/TEN can lead to systemic bacterial infections, pneumonia, multiple system organ failure and death. The risk of death for SJS is approximately 1-5%, and for TEN 25%-35%. However, survivors of SJS/TEN have life-long complications affecting their eyes, hair, genitourinary tract, and more. While there are no definitive documented statistics on the effects of SJS/TEN within the Canadian population, there are over 50 known cases nationwide, including children, teens, adults and elders. The cases include both males and females of a variety of races. Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) are severe skin reactions often triggered by medications or infections. They involve widespread skin detachment and mucous membrane involvement, leading to significant morbidity and mortality. SJS and TEN represent different degrees of severe, acute, life-threatening mucocutaneous reactions mainly resulting from drugs. SJS/TEN causes the skin to become red and purple, tender, and peel away from the body. These diseases affect not only the skin on the external surface of the body but also the moist lining of the mouth, nose, eyes, genitals, and other body parts. Both conditions are considered a medical emergency that requires hospitalization and patient management is usually provided in intensive care units or burn centers. Recovery can take weeks to months, and there are numerous long-term sequelae. Medications are the major precipitating cause and some drugs have a greater genetic risk factor. Newer treatments include safe anti-inflammatory biological injections like Etanercept. WOMEN are nearly 1.5x more likely to experience SJS/TEN than men. SJS/TEN AFFECTS 1-7 cases per million patients. Additional Information about SJS / TEN: Definition of syndrome A life threatening disease with blistering of the skin and eroding of mucous membranes (eyes, mouth, genitals). Cause 80% are caused by an identifiable drug, 20% are unknown. Drugs are varied but anti-seizure medications, sulfonamides and allopurinol are top of the list. Qualifiers of the syndrome The severity of SJS to TEN depends on the amount of skin involved (can be 100%) and all patients with SJS/TEN will need to be treated in an Intensive Care. The term SJS is used when the blistering of the skin involves less than 10% of the total body surface area. The term TEN is used when the blistering involves more than 30% of the body surface area. The term SJS/TEN overlap is used when there is blistering that covers between 10 to 30% of the body surface area. Impact on patients' quality of life Depending on the stage many patients will die. For the 80% who survive there are life-long medical, physical, and psychological traumas that persist. Treatment Early treatment is life-saving. Different stages might need different treatments. Intensive Care Burn Centers are optimal. Therapies include immune modulators like corticosteroids, anti-TNF (e.g., Etanercept) biologicals, and amnion for eye involvement. Prevalence rates in Canada Perhaps 1 to 2 per million Canadians will be afflicted per year. Some Facts The condition is rare so it might be missed. Delay is a risk for a poor outcome. There are genetic tests for some patients that might help reduce the risk. Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis are two rare, acute, but life-threatening skin conditions. Both conditions are usually allergic reactions to medication, however; in some cases, the causes remain unknown. Approximately 1-7 people per million are affected globally each year Here is a summary of their long-term effects: 1. Skin and Mucous Membranes: Scarring: Severe scarring and pigmentation changes can occur, especially in areas where the skin has detached. Dryness and Sensitivity: Chronic dryness and sensitivity of the skin can persist, requiring ongoing dermatological care. Nail Abnormalities: Permanent nail loss or deformities may occur due to damage to the nail beds. 2. Ocular Complications: Chronic Dry Eye: Damage to the tear ducts can lead to persistent dry eye syndrome. Vision Impairment: Scarring of the cornea, conjunctiva, or eyelids can result in vision loss or blindness. Photophobia: Sensitivity to light may persist due to ocular surface damage. 3. Respiratory System: Chronic Respiratory Issues: Damage to the respiratory mucosa can lead to chronic cough, bronchitis, or even pulmonary fibrosis. Airway Obstruction: Severe cases may lead to long-term airway obstruction requiring medical intervention. 4. Gastrointestinal Tract: Esophageal Strictures: Scarring in the esophagus can lead to strictures, causing swallowing difficulties. Malabsorption: Damage to the gastrointestinal lining may result in long-term absorption issues. 5. Genital and Urinary Tract: Strictures and Scarring: Scarring can cause strictures in the urinary tract and genital area, leading to difficulties in urination and sexual dysfunction. 6. Psychological Impact: Post-Traumatic Stress Disorder (PTSD): The traumatic experience and prolonged recovery can lead to PTSD, depression, and anxiety. Body Image Issues: Visible scarring and disfigurement can cause significant distress and impact self-esteem. 7. Neurological Complications: Peripheral Neuropathy: Some patients may experience nerve damage leading to chronic pain or sensory issues. 8. Immune System: Long-term Immunological Changes: SJS/TEN can lead to changes in immune system function, potentially increasing susceptibility to infections or autoimmune disorders. These long-term effects necessitate a multidisciplinary approach to care, involving dermatologists, ophthalmologists, pulmonologists, gastroenterologists, urologists, psychologists, and other specialists to manage the diverse and complex sequelae of these conditions. Regular follow-up and comprehensive care plans are essential for improving the quality of life for affected individuals.

A brief history Stevens-Johnson Syndrome Canada (SJSC aka SJS Canada) is a registered, non-profit organization dedicated to spreading awareness about Stevens-Johnson Syndrome, an extremely rare life-threatening medical illness. SJS Canada was born in the heart of an SJS/TEN survivor, Sonia Whyte-Croasdaile, in 2012. She battled SJS/TEN for almost 6 weeks and survived a near-death experience. While in the hospital, she was informed that SJS/TEN was rare. To her dismay, she faced multiple obstacles in her quest for psychological support. There were no resources available in Canada to support her journey to recovery. The local doctors and specialists she visited had not encountered SJS before. Some had not even heard of the disease. She had no one or nowhere to turn to for support as she encountered drastic changes to her physical appearance. Sonia purposed within her heart that no other Canadian should travel this journey alone. With the help of her supportive family and friends, SJS Canada was formed. Her miraculous survival inspired her to create a well-needed outlet to spread awareness about this life-threatening medical illness that burns the body from the inside out. SJS Canada is a registered and dedicated non-profit organization committed to raising awareness, providing support, and advocating for individuals affected by Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) in Canada and around the world. The organization aims to educate the public, healthcare professionals, and policymakers about these rare and life-threatening conditions to improve patient outcomes and quality of life. Key Objectives following our Strategic Directions: 1. Awareness: SJS Canada works tirelessly to increase public and professional awareness of SJS/TEN, highlighting the importance of early diagnosis and appropriate treatment. Through campaigns, events, and educational resources, the organization strives to ensure that SJS is recognized and treated promptly to prevent severe complications. 2. Support: The organization offers crucial support to patients, survivors, and their families. This includes emotional support, information on managing the condition and connecting individuals with medical experts and fellow survivors. SJS Canada provides resources that help patients/survivors navigate the challenges of living with SJS/TEN, from initial diagnosis to long-term recovery. 3. Advocacy: SJS Canada advocates for improved healthcare policies and practices related to the diagnosis, treatment, and management of SJS/TEN. The organization collaborates with healthcare professionals, researchers, and policymakers to promote better understanding and care for those affected. 4. Research: By supporting and promoting research, SJS Canada contributes to advancing medical knowledge about SJS/TEN. The organization is involved in initiatives that aim to discover more about these conditions' causes, prevention, and treatment. Programs and Services: - Educational Outreach: SJS Canada conducts educational programs and workshops to inform healthcare providers, students, and the general public about SJS/TEN. These initiatives are crucial for fostering early recognition and improving patient care. - Patient and Family Support: The organization offers resources such as support groups, online communities, and one-on-one assistance to help patients and families worldwide cope with the emotional and physical challenges of SJS/TEN. - Awareness Campaigns: Throughout the year, especially during SJS Awareness Month, SJS Canada organizes campaigns to raise visibility for the condition, share survivor stories, and educate the public on identifying and responding to SJS/TEN. - Advocacy Efforts: SJS Canada engages with government bodies and healthcare institutions to advocate for policies that improve patient care, support research, and ensure access to necessary treatments. Incidence, Impact and Challenges in Canada: SJS is extremely rare, with an estimated incidence of 1 to 6 cases per million people per year in Canada. Due to its rarity, awareness among healthcare professionals and the public is crucial for early diagnosis and treatment. SJS Canada has been making a significant impact by connecting patients and families with vital resources, advocating for improved healthcare practices, and fostering a supportive community for those affected by SJS/TEN. Their efforts have helped to bring SJS/TEN into the spotlight, ensuring that more people are aware of these conditions and that patients receive the care they need. - Awareness: Despite its severity, SJS is not widely known, leading to potential delays in diagnosis and treatment. - Support Systems: Patients may face long-term complications, including vision problems, skin scarring, and psychological effects, necessitating ongoing medical and emotional support. - Research and Advocacy: Efforts are ongoing in Canada to increase awareness, improve treatment protocols, and support research into the causes and prevention of SJS. On the whole, SJS Canada continues to be a vital resource for individuals affected by Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis. Through its comprehensive approach—spanning awareness, support, advocacy, and research—the organization plays a crucial role in improving the lives of those affected by these severe conditions in Canada and globally. We are dedicated to providing support for survivors, family, friends, and caregivers in the SJS/TEN community. Be part of our community and make the difference. Our Mission Our Mission: Supporting survivors and promoting global SJS/TEN education, advocacy, and research for prevention and treatment. Our Vision: A world where SJS/TEN is widely recognized, understood, cured and prevented. SJS Canada Values: SJSC upholds respect, transparency, accountability, collaboration, fostering empowerment and accessibility, and providing support for those affected by Stevens-Johnson Syndrome/TEN SJS Canada Aims: Promote health by providing people suffering from SJS/TEN as well as their families and caregivers with access to related counselling, support groups and information programs. To advance education by providing workshops, forums and seminars about the SJS/TEN to the public and medical professionals. SJS Canada Strategic Directions: 1 Sustainability, Fundraising, Networking & Collaboration SJSC is committed to: sustainability in financial planning and management. gaining multiple sources of sustainable funds. building networks and partnerships with organizations. 2 Education & Awareness SJSC is committed to raising awareness through education of survivors, medical and general communities. 3 Marketing & Communications: SJSC is committed to developing our marketing and communication strategy to increase our reach.

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Support Group Most often when an individual is trying to cope through challenging times, family members and friends may sympathize, but they don’t always know what to say or the best ways to help. Reasons to join our SJS/TEN Support Group: We care for supporters and SJS/TEN survivors on the recovery journey. The group was developed to connect those of us who are dealing with similar challenging circumstances—the long-term effects of SJS/TEN. Through sharing our experiences, we can offer support, encouragement, and comfort to each other and receive the same in return. The SJS/TEN recovery journey can be very challenging. Therefore, one of the best medicines is often the voice of people who have been in your shoes. Our monthly meetings allow personal conversations with expert medical specialists in the SJS/TEN field. Our Support Group is a safe and nurturing space where individuals come together to share experiences, encouragement, and foster personal growth. Our mission is to empower each member their journey to better health through connection, understanding, and shared resources. Join us as we support one another in achieving our wellness goals and building a healthier future together. Read more about SJS treatment info@sjscanada.org Name Email Subject Your message Send Thanks for submitting!

In Memoriam

Affiliates Our partnerships as affiliates with the Canadian Skin Patient Alliance (CSPA) and the International Alliance of Dermatology Patient Organizations (IADPO—also known as GlobalSkin) have afforded us the opportunity to collaborate and build relationships with multiple organizations that treat a variety of skin disorders. By doing so, we are able to expand the reach of the SJS/TEN patient community so they have access to added resources. Our skin, the largest organ in our body is the first introduction of oneself to the world. These organizations help to build SKIN confidence and define the skin you are in. Registered member with the National Organization for Rare Disease (NORD) since 2023. Canadian Skin has some valuable information in support of SJS click here for more. The Canadian Skin Patient Alliance (CSPA) is a national non-profit organization dedicated to advocating, educating and supporting Canadians living with skin diseases, conditions and traumas. They serve as an umbrella organization for Canadian patient groups and organizations that deal with specific skin disorders. By working together, they advocate for the needs of skin patients across the country and provide a broad range of education and support. Visit canadianskin.ca Founded on principles of patient-centered care and global collaboration, the World Patients Alliance (WPA) unites diverse patient organizations worldwide. With a steadfast commitment to empowering patients and improving healthcare outcomes, WPA facilitates dialogue among its extensive network of members spanning various health conditions and geographical locations. SJS Canada's inclusion as a Full Member underscores its dedication to enhancing patient support, education, and advocacy on an international scale. This milestone strengthens WPA’s mission to champion patient rights and amplify the collective voice of patients globally. The International Alliance of Dermatology Patient Organizations (IADPO – also known as GlobalSkin) is a unique global alliance, committed to improving the lives of skin patients worldwide. We nurture relationships with members, partners and all involved in healthcare ─ building dialogue with decision-makers around the globe to promote patient-centered healthcare. GlobalSkin works to empower its more than 167 patient organization members ─ located in 53 countries representing more than 60 disease areas ─ to reach more patients and provide them with greater support, education and advocacy. Visit globalskin.org Lupus Ontario is a dedicated provincial organization committed to improving the lives of those affected by lupus. We foster strong relationships with our members, partners, and everyone involved in healthcare, creating a dialogue with decision-makers across the region to promote patient-centered healthcare. Lupus Ontario strives to empower its extensive network of patient organization members, providing support, education, and advocacy to reach more patients and enhance their quality of life. With a focus on patient needs, we work tirelessly to offer greater resources and assistance to those living with lupus throughout Ontario. The National Organization for Rare Disorders (NORD) is a leading advocate for individuals and families affected by rare diseases, dedicated to improving their lives through advocacy, education, and support. NORD brings together a diverse network of patient organizations, healthcare partners, and stakeholders to foster dialogue and drive impactful change in rare disease care. Representing over 30 million Americans affected by rare diseases, NORD advocates for policies that advance research, accelerate treatment development, and ensure access to therapies. Visit rarediseases.org Streaming Praise Radio (sprlivefm.com) is Canada’s first gospel internet radio station, offering 24/7 Christian music and talk shows, including the popular Praise Life morning show. It supports diverse music genres and independent artists. The station is deeply involved in community initiatives and has embraced digital platforms with successful YouTube live-streaming shows. During the 2020 pandemic, it hosted its first annual organ donor awareness benefit virtual concert, highlighting its commitment to making a positive impact. Visit worldpatientsalliance.org Visit lupusontario.org Visit sprlivefm.com