Rare Diseases / Undiagnosed Services in Ontario
Rare diseases affect fewer than 1 in 2,000 people. With over 7,000 known rare diseases and many undiagnosed conditions, finding support and specialists can be particularly challenging.
Rare Diseases / Undiagnosed Organizations
ATRC Chronic Pain and Sports Clinic
Greater Sudbury, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Greater Sudbury, Ontario. Provides recreation, sports programs.
Arthritis Health Professions Association
Burlington, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Burlington, Ontario. Provides advocacy, support groups, resources.
Arthritis Society
Tillsonburg, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Tillsonburg, Ontario. Provides advocacy, support groups, resources.
Arthritis Society
Bracebridge, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Bracebridge, Ontario. Provides advocacy, support groups, resources.
Arthritis Society
Brampton, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Brampton, Ontario. Provides advocacy, support groups, resources.
Arthritis Society Canada
Mississauga, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Mississauga, Ontario. Provides advocacy, support groups, resources.
Arthritis Society Canada
Kitchener, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Kitchener, Ontario. Provides advocacy, support groups, resources.
Arthritis Society Canada
Owen Sound, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Owen Sound, Ontario. Provides advocacy, support groups, resources.
Arthritis Society Canada
Thunder Bay, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Thunder Bay, Ontario. Provides advocacy, support groups, resources.
Arthritis Society Canada
Kingston, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Kingston, Ontario. Provides advocacy, support groups, resources.
Arthritis Society Canada
Burlington, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Burlington, Ontario. Provides advocacy, support groups, resources.
Arthritis Society Canada
London, ON
Nonprofit organization supporting individuals and families affected by rare conditions in London, Ontario. Provides advocacy, support groups, resources.
Arthritis Society Canada
Ottawa, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Ottawa, Ontario. Provides advocacy, support groups, resources.
Arthritis Society Canada - National Office
Toronto, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Toronto, Ontario. Provides advocacy, support groups, resources.
Arthritis Society Info Ctr
Sault Ste. Marie, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Sault Ste. Marie, Ontario. Provides advocacy, support groups, resources.
Canadian Chronic Pain Association
Toronto, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Toronto, Ontario. Provides advocacy, support groups, resources.
Canadian Cystic Fibrosis Treatment Society
Toronto, ON
Nonprofit organization supporting individuals and families affected by chronic in Toronto, Ontario. Provides advocacy, support groups, resources.
Canadian Marfan Assn
Mississauga, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Mississauga, Ontario. Provides support services, resources.
Canadian Organization for Rare Disorders (CORD)
Toronto, ON
National advocacy organization for Canadians affected by rare diseases, representing over 1 in 12 Canadians with a rare disorder.
Canadian Spondyloarthritis Association
Toronto, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Toronto, Ontario. Provides advocacy, support groups, resources.
Chronic Pain Centre of Excellence for Canadian Veterans
Hamilton, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Hamilton, Ontario. Provides support services, resources.
Chronic Pain Network
Hamilton, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Hamilton, Ontario. Provides employment support, job training.
Crohn's and Colitis Canada
Toronto, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Toronto, Ontario. Provides support services, resources.
Cystic Fibrosis Canada
Toronto, ON
National organization funding research, advocating for improved care, and supporting Canadians with cystic fibrosis.
Cystic Fibrosis Canada
Thunder Bay, ON
Nonprofit organization supporting individuals and families affected by chronic in Thunder Bay, Ontario. Provides support services, resources.
Cystic Fibrosis Canada - Essex-Kent Chapter
Windsor, ON
Nonprofit organization supporting individuals and families affected by chronic in Windsor, Ontario. Provides support services, resources.
Cystic Fibrosis Canada / Fibrose Kystique Canada
Toronto, ON
Registered Canadian charity providing disability-related services. CRA Registration: 106845100RR0001
Cystic Fibrosis Chapter of KW
Kitchener, ON
Nonprofit organization supporting individuals and families affected by chronic in Kitchener, Ontario. Provides support services, resources.
Fibromyalgia Pain Clinic by Cutler Integrative Health
Windsor, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Windsor, Ontario. Provides support services, resources.
Fibromyalgia Support - Ottawa West
Nepean, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Nepean, Ontario. Provides support services, resources.
Flourishing With Fibromyalgia Academy
Barrie, ON
Online academy offering courses, coaching, and resources for individuals living with fibromyalgia. Based in Barrie, Ontario.
Fragile X Research Foundation Of Canada
Brampton, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Brampton, Ontario. Provides funding, grants, resources.
Global Sickle Cell Disease Network
Toronto, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Toronto, Ontario. Provides employment support, job training.
Huntington Society Of Canada
Waterloo, ON
Registered Canadian charity providing disability-related services. CRA Registration: 118965516RR0001
Huntington Society of Canada
Kitchener, ON
National organization providing support, education, and advocacy for people affected by Huntington's disease, with provincial chapters.
Huntington University
Sudbury, ON
Registered Canadian charity providing disability-related services. CRA Registration: 118965532RR0001
London Cystic Fibrosis Chapter
London, ON
Nonprofit organization supporting individuals and families affected by chronic in London, Ontario. Provides support services, resources.
Lupus Clinic
Toronto, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Toronto, Ontario. Provides support services, resources.
Lupus Ontario
Oshawa, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Oshawa, Ontario. Provides support services, resources.
Lupus Plus Foundation
Brampton, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Brampton, Ontario. Provides funding, grants, resources.
Mississauga Chronic Pain Centre
Mississauga, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Mississauga, Ontario. Provides support services, resources.
Niagara Peninsula Arthritis Centre
St. Catharines, ON
Nonprofit organization supporting individuals and families affected by rare conditions in St. Catharines, Ontario. Provides support services, resources.
Ontario Lupus Association
London, ON
Nonprofit organization supporting individuals and families affected by rare conditions in London, Ontario. Provides advocacy, support groups, resources.
Ontario Rett Syndrome Association
Mississauga, ON
Registered Canadian charity providing disability-related services. CRA Registration: 890178999RR0001
Releva Chronic Pain Centre
Etobicoke, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Etobicoke, Ontario. Provides support services, resources.
Rett Syndrome Association of Canada
Toronto, ON
National organization supporting families affected by Rett Syndrome through 3 clinics, research, and a national registry.
SCAGO (Sickle Cell Awareness Group of Ontario)
North York, ON
Nonprofit organization supporting individuals and families affected by rare conditions in North York, Ontario. Provides support services, resources.
Sickle Cell Association of Ontario
North York, ON
Nonprofit organization supporting individuals and families affected by rare conditions in North York, Ontario. Provides advocacy, support groups, resources.
Sickle Cell Disease Association Of Canada
Toronto, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Toronto, Ontario. Provides advocacy, support groups, resources.
The Arthritis Society- Ontario Division
Greater Sudbury, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Greater Sudbury, Ontario. Provides advocacy, support groups, resources.
The Cystic Fibrosis Gala
Ariss, ON
Nonprofit organization supporting individuals and families affected by chronic in Ariss, Ontario. Provides support services, resources.
The Fragile X Research Foundation of Canada
Scarborough, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Scarborough, Ontario. Provides funding, grants, resources.
The Myalgic Encephalomyelitis Association Of Ontario
North York, ON
Nonprofit organization providing disability support services in North York, Ontario. Offers advocacy, support groups, resources.
The Oshawa Chronic Pain and Migraine Clinic
Oshawa, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Oshawa, Ontario. Provides support services, resources.
The Sierra Leone Sickle Cell Disease Foundation
Toronto, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Toronto, Ontario. Provides funding, grants, resources.
Toronto Fibromyalgia Support Group
North York, ON
Nonprofit organization supporting individuals and families affected by rare conditions in North York, Ontario. Provides support services, resources.
Tourette Canada
Brampton, ON
Nonprofit organization supporting individuals and families affected by neurological conditions in Brampton, Ontario. Provides support services, resources.
Tourette Syndrome Foundation Of Canada-Ottawa Chapter
Nepean, ON
Nonprofit organization supporting individuals and families affected by neurological conditions in Nepean, Ontario. Provides funding, grants, resources.
Turner Syndrome Society
Ottawa, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Ottawa, Ontario. Provides advocacy, support groups, resources.
Turner Syndrome Society Of Canada
Toronto, ON
Nonprofit organization supporting individuals and families affected by rare conditions in Toronto, Ontario. Provides advocacy, support groups, resources.
Related Programs & Benefits
A provincial program providing monthly payments to help with the extra costs of caring for a child with a severe disability. Rate increased 2.8% in July 2025. Also covers assistive device assessments and device consumer contributions. CDB is exempted from ACSD calculations.
A new federal benefit providing $200/month for persons aged 18-64 with low income who have Disability Tax Credit approval. First month of eligibility was June 2025 with payments starting July 2025. Back payments available up to 24 months from application date. Most provinces have exempted the CDB from provincial benefit calculations, but Alberta claws back CDB from AISH recipients dollar-for-dollar.
A monthly taxable benefit for people who have contributed to the Canada Pension Plan and are unable to work due to a severe and prolonged disability. Includes a children's benefit of $301.77/month per child. Quebec residents apply through the Quebec Pension Plan (QPP) instead.
A federal autism strategy developed in collaboration with the autistic community, families, service providers, researchers, and provincial/territorial governments. AIDE Canada (Autism & Intellectual Disabilities Knowledge Exchange Network) is funded by the Public Health Agency of Canada as part of this strategy, providing online resources, an inventory of services, and 6 in-person locations across Canada.
A federal dental care plan administered through Sun Life, available to eligible Canadians including those with Disability Tax Credit qualification. Covers essential oral health services including preventive care, restorative services, and other dental treatments.
An ESDC-funded program where nonprofits provide one-on-one navigation support to help people with disabilities find and apply for benefits they are entitled to, including DTC, CDB, RDSP, CPP-D, and provincial benefits. Organizations are funded across all provinces and territories to provide free assistance.
A non-refundable tax credit for individuals with a severe and prolonged impairment in physical or mental functions. The DTC is the gateway to other federal benefits including the Canada Disability Benefit, RDSP, and Child Disability Benefit. Can transfer unused portion to a supporting family member for a refund of up to approximately $1,400.
Ontario's program for children and youth with an Autism Spectrum Disorder diagnosis. Registered through AccessOAP. Currently under an interim funding model with the government working toward a needs-based model using a Determination of Needs process (4-hour virtual interview). Services include ABA, occupational therapy, speech-language pathology, and mental health supports. Waitlists are significant, and families report costs of $26,000-$130,000/year for autism supports.
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