The Canadian Society for Mucopolysaccharide & Related Diseases Inc.

The Canadian Society for Mucopolysaccharide & Related Diseases Inc. (CSMRDI) is a Canadian nonprofit organization dedicated to supporting individuals and families affected by mucopolysaccharidoses (MPS) and related lysosomal storage diseases. Registered under business number 129030409RR0001, the Society operates primarily from Vancouver, British Columbia, providing education, advocacy, support services, and funding for research into treatments and potential cures for these rare genetic disorders.

Mission and Vision

The Society aims to empower Canadians affected by MPS and similar disorders to live their best lives through support, education, and community connection. A central goal is to facilitate access to resources, clinical trials, and emerging therapies by collecting vital data to advance medical research and treatment options in Canada.

Overview of Mucopolysaccharidoses (MPS) and Related Diseases

MPS and related diseases are a group of rare, inherited lysosomal storage disorders characterized by the body's inability to break down mucopolysaccharides (long chains of sugar molecules). This enzymatic deficiency leads to the accumulation of waste materials in cells, causing progressive damage to tissues and organs. These diseases affect both children and adults and vary in severity and symptoms.

Activities and Services

• Support and Education: The Society offers various programs to assist families in managing diagnoses and disease progression, including newly diagnosed support, educational materials, and community networking opportunities.

• Canadian MPS Registry: The Society manages a confidential registry collecting data on individuals with MPS in Canada, which is crucial for clinical research and the development of new treatments. Information is anonymized to protect patient privacy.

• Advocacy and Fundraising: The organization raises funds to support research initiatives and works to increase awareness of MPS and related diseases among healthcare providers, policymakers, and the public.

• Community Engagement: Membership provides individuals and families access to a supportive community, sharing experiences and stories to foster connection and mutual assistance.

Membership and Accessibility

Membership is open to individuals affected by MPS and related diseases, their families, caregivers, professionals, and other associates. The Society operates bilingually in English and French to serve the diverse Canadian population.

Affiliations

The Canadian Society for Mucopolysaccharide & Related Diseases is recognized as a member of the Canadian Organization for Rare Disorders (CORD), aligning with national efforts to support rare disease communities.

The Society continues to play a vital role in supporting the rare disease community in Canada by providing essential resources, fostering research collaboration, and advocating for improved treatment access for those living with MPS and related disorders.

[1] https://www.mpssociety.ca [2] https://rarediseases.org/organizations/canadian-society-for-mucopolysaccharide-and-related-diseases-inc/ [3] https://www.mpssociety.ca/what-is-mps/ [4] https://www.orpha.net/en/patient-organisations/patient/360090?name=&mode= [5] https://mb.211.ca/detail/44790437/