Grant: Planning and Dissemination Grant - Institute Community Support

Localized scleroderma (LS), also called morphea, is a rare autoimmune disease that causes thick, hardened skin and, in more severe forms, permanent damage to joints, muscles, teeth, and vision. In Canada, people living with LS often face long delays in diagnosis and a lack of clear treatment guidelines-especially adults. Many feel isolated and unsure where to get care or information. To change this, the Canadian Morphea Registry and Repository (C-MORE) was created. C-MORE brings together doctors, researchers, patients, and advocates from 17 academic hospitals to improve care and advance research. The C-MORE First Annual Conference, to be held on October 18, 2025 in Montreal, is the first national event in Canada focused entirely on LS. It will provide a space for researchers, healthcare providers, patients, and students to come together to share ideas, build partnerships, and learn from one another. Patients will help lead discussions on their biggest needs and research priorities. Doctors will get hands-on training to improve how they assess and treat LS. Young researchers will share their work and receive awards for excellence. This event is designed to be inclusive and accessible: it will be offered both in person and online, with support for students and patients from across Canada to participate. All sessions will be recorded and shared on the C-MORE website. Key takeaways-including plain language summaries-will be shared with patients, advocacy groups, and healthcare providers nationwide. By connecting experts and people with lived experience, this conference will help improve diagnosis and treatment for LS, raise awareness, and ensure that patients' voices guide future research. It also marks the first step toward developing national treatment guidelines for adults with LS-something that doesn't yet exist in Canada.