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
Arthritis Health Professions Association
Burlington, ON
Arthritis Society
Bracebridge, ON
Arthritis Society
Brampton, ON
Arthritis Society
Tillsonburg, ON
Arthritis Society Canada
Kitchener, ON
Arthritis Society Canada
London, ON
Arthritis Society Canada
Mississauga, ON
Arthritis Society Canada
Owen Sound, ON
Arthritis Society Canada
Thunder Bay, ON
Arthritis Society Canada
Ottawa, ON
Arthritis Society Canada
Burlington, ON
Arthritis Society Canada
Kingston, ON
Arthritis Society Canada - National Office
Toronto, ON
Arthritis Society Info Ctr
Sault Ste. Marie, ON
Canadian Chronic Pain Association
Toronto, ON
Canadian Cystic Fibrosis Treatment Society
Toronto, ON
Canadian Marfan Assn
Mississauga, ON
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
Chronic Pain Centre of Excellence for Canadian Veterans
Hamilton, ON
Chronic Pain Network
Hamilton, ON
Crohn's and Colitis Canada
Toronto, ON
Cystic Fibrosis Canada
Thunder Bay, ON
Cystic Fibrosis Canada
Toronto, ON
National organization funding research, advocating for improved care, and supporting Canadians with cystic fibrosis.
Cystic Fibrosis Canada - Essex-Kent Chapter
Windsor, ON
Cystic Fibrosis Canada / Fibrose Kystique Canada
Toronto, ON
Cystic Fibrosis Chapter of KW
Kitchener, ON
Fibromyalgia Pain Clinic by Cutler Integrative Health
Windsor, ON
Fibromyalgia Support - Ottawa West
Nepean, ON
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
Global Sickle Cell Disease Network
Toronto, ON
Huntington Society Of Canada
Waterloo, ON
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
London Cystic Fibrosis Chapter
London, ON
Lupus Canada
Newmarket, ON
Lupus Canada is a national charitable organization dedicated to improving the lives of Canadians impacted by lupus through advocacy, research, public awareness, support, and education. It works to increase understanding of lupus, advance patient-focused priorities, provide trusted educational resources, and advocate for improved outcomes and access to care.
Lupus Clinic
Toronto, ON
Lupus Ontario
Oshawa, ON
Lupus Plus Foundation
Brampton, ON
Mississauga Chronic Pain Centre
Mississauga, ON
Niagara Peninsula Arthritis Centre
St. Catharines, ON
Ontario Lupus Association
London, ON
Ontario Rett Syndrome Association
Mississauga, ON
Releva Chronic Pain Centre
Etobicoke, ON
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
Sickle Cell Association of Ontario
North York, ON
Sickle Cell Disease Association Of Canada
Toronto, ON
The Arthritis Society- Ontario Division
Greater Sudbury, ON
The Cystic Fibrosis Gala
Ariss, ON
The Fragile X Research Foundation of Canada
Scarborough, ON
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
The Sierra Leone Sickle Cell Disease Foundation
Toronto, ON
Toronto Fibromyalgia Support Group
North York, ON
Tourette Canada
Brampton, ON
Tourette Syndrome Foundation OF Canada/tourette Syndrome Foundation DU Canada
Brampton, ON
Tourette Syndrome Foundation Of Canada-Ottawa Chapter
Nepean, ON
Tourette Syndrome Foundation of Canada / La Fondation canadienne du syndrome de la Tourette
Brampton, ON
Turner Syndrome Society
Ottawa, ON
Turner Syndrome Society Of Canada
Toronto, ON
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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