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MitoAction International - Canada Canada

 No matter where you live, living with mitochondrial disease is challenging.  Whether you are a parent of an affected child or an adult patient, you need support. You need information.  You need guidance and a community while on this journey.

Unlike some conditions, mitochondrial disease is life-changing and has no period of remission.  It is learning to be a great advocate for oneself or one's child that is often so difficult in the early years of diagnosis.  On the other hand, when we do find support and feel like we are on solid ground, we feel so triumphant!

This page was created by volunteers who are adult patients, caregivers, or parents of children who have Mito.  It is their sincere wish that this list of resources makes the journey easier for you.  The information on these pages was accurate and complete to the best knowledge of all involved at the time of submission.

We welcome your comments, suggestions, or requests for support:

Canadian Resources - search engines:

Listings Canada is an all-purpose search engine for non-profit orgs

 Disability Resources listed by province for people living each province: see the listing of the province (eg. Yukon )


Federal Government of Canada:

 Aboriginal Resources Canada

Canada Pension Plan (CPP) Disability Benefits

Centre for persons with Disabilities online

Child Disability Benefit (CDB)

  • A tax free benefit for families who care for a child who qualifies for the disability amount.  It is paid monthly to the Canada Child Tax Benefit

 Customs Information

  • 9979.00.00 Goods specifically designed to assist persons with disabilities in alleviating the effects of those disabilities, and articles and materials for use in such goods. Free.  NO DUTY

 Disability Tax Credit Certificate (form T2201)

  • You are eligible for the disability amount only if a qualified practitioner certifies that there is a severe and prolonged impairment.

 Excise tax information

  • If you are medically certified as having permanent mobility impairment, and you cannot safely use public transportation, you can apply for a refund of part of the federal excise tax on the gasoline you buy.  For more information and an application form, see Information Sheet XE8, Federal Excise Gasoline Tax Refund Program.

 GST/ HST Information

  • Some of the goods and services used by persons with disabilities that are exempt from, or zero-rated for the GST/HST.

 Health Canada

  Links to offices of the Ombudsman in the provinces  

  • The Ombudsman will investigate complaints against government departments.  They are independent of government and have investigational powers and can take issues to parliament and the media.

Registered Disability Savings Plan (RDSP)

  • tax-deferred savings plan designed to assist families in planning for the long-term financial security of their relatives with disabilities. The federal government matches contributions made through the Canada Disability Savings Grant. For people who have limited financial means, the Canada Disability Savings Bond is available without contributions.

 Respite for Family Caregivers

Topics for Persons with a Disability  

  • A webpage guideline of topics of interest to people with disabilities.


Forms and publications

Related topics

Government partners

Canadian Organizations

Access Guide Canada - directory by province of disability associations

Access to Justice Network Canada

Active Living Alliance for People with Disabilities

Allergy/ Asthma Association of Canada

Angel Flights (Ontario and British Columbia have their own versions)

Association of Compounding Pharmacies of Canada

Canadian Association for the Deaf

Canadian Celiac Association:

Council of Canadians with Disabilities

Canadian Directory of Palliative Care

Canadian Medic Alert Foundation

Canadian Muscular Dystrophy Assoc.

Canadian National Institute for the Blind

Canadian Orthopedic Association

Canadian Organization for Rare Disorders

Canadian Society of Intestinal Research

Canadian Special Olympics

Centre for Child Disability Research

Charity Village

Coalition for Active Living in Canada

College of Family Physicians of Canada

Dietitians Canada

Easter Seals Canada

Diabetes Information   and

Disabled Parking in Canada

Financial Assistance Programmes (compilation of links)

Heart and Stroke Foundation

Home Care and Respite

Home Care Links

Independent Living Canada

International Foundation for Functional Gastrointestinal Disorders

Kidney Foundation Canada

Lifeline Canada

March of Dimes Canada

March of Dimes Mobility

Motion Specialties Canada

Palliative Care Canada

President's Choice Children's Charity

Public Health Agency of Canada

Society of Obstetrics and Gynecologists of Canada

Variety Village -

Vocational Rehabilitation Canada


Provincial Governments:



* Provincial Disability Search


Children and Youth Services


Alberta Centre for Child and Community Research


Chronic Disease Self Management


Child Health Benefit

  • For families with low income. This plan pays for health services such as eyeglasses, prescription drugs and dental care


Family Support for Children with Disabilities

  • The FSCD program uses a family-centred approach to provide parents with funding to access a range of supports and services that strengthen their ability to promote their child's healthy growth and development.  In addition, FSCD assists with some of the extraordinary costs of raising a child with a disability.
  • Children who are significantly limited in their activities of daily living due to their disability may receive child focused services.  Services are determine based on the  impact of the child's disability on their activities of daily living, the needs identified by the parent/guardian, as well as assessment information from professionals who work with the child.  Services may include: 
    • additional respite services, including short-term hourly respite, 24-hour in- or out-of-home respite, homemaking support and domestic child care;
    • assistance with child care to support a family with extraordinary work related child care costs, including an aide in day care or additional space in a day home as well as day care where required to support the child's development;
    • aide support to assist the child with personal care, community involvement or behavioural and developmental support.
    • health-related services, including dental or orthodontic treatment, disability-related prescription drugs, ambulance service, prescription formula or special diet and medical supplies that are not covered under any other health plan;
    • specialized services for children with severe disabilities; and
    • out-of-home living arrangements, if necessary, to support a child when all other alternatives for in-home supports have been explored. (Note: the parent/guardian maintains all guardianship responsibilities)


Health and Wellness

Pro Bono Law

  • free of charge legal services

Vocational Rehabilitation

British Columbia:

* Provincial Disability Search

Aboriginal Infant Development Programme of B C

  • Provides culturally appropriate services to aboriginal families of children, age 0 to 3, who are at-risk for or who may have a delay in development.

Access Pro Bono  

  • Free of charge legal services

Advocate for Service Quality

  • Assists in situations involving adults with developmental disabilities and transitioning youth with special needs and their families who could benefit from the intervention of someone working independently of ministries and agencies.

At Home Programme

  • The At Home Program assists parents with some of the extraordinary costs of caring for a child with severe disabilities at home through a range of health supports and services. It provides assistance in two main areas:

Respite Benefits allow parents to choose appropriate care options for their child and family.

Medical Benefits provide a range of basic, essential medical items and services

Autism Society of BC

  • A parent based and directed society providing support to individuals with autism spectrum disorder and their families in British Columbia and the Yukon.

B C Aboriginal Child Care Society

  • Offers training workshops, newsletters and a lending library.  This society is also responsible for the Office of the Provincial Advisor for the Aboriginal Infant Development programme

B C Aboriginal Network on Disability Society

  • Provides a variety of support services and resources to help Bc's Aboriginal people with disabilities.

B C Association of Child Development and Intervention 

  • Provincial Association of agencies which provide child development and therapy services to children with special needs and their families in British Columbia

B C Centre for Disease Control

B C Crisis Centres

B C Housing  and

  • Subsidized housing
  • Who can apply

B C Palliative Care and Hospice Association

Canuck Place

  • Canuck Place Children's Hospice provides specialized pediatric palliative care for children living with a life-threatening illness and support for their families throughout British Columbia.

Child Care Services

Children and Women's Health Centre of British Columbia

  • An agency of the Provincial Health Services Authority, made up of British Columbia's Children's Hospital, British Columbia's Women's Hospital and Health Centre and Sunny Hill Health Centre

Children and Youth with Special Needs (.pdf file)

Children and Youth with Special Needs (link)

  • Responsible for providing a range of services and supports for children and youth with special needs and their families.


Chronic Disease Management

Chronic Disease Self Management

Community Living BC

  • Responsible for delivering services and supports for adults with developmental disabilities

Disability Permits for vehicles

Employment and Assistance for Persons with Disabilities

 Family Hearing Resource Centre

  • A provincial programme that provides comprehensive services to families with young deaf and hard of hearing children throughout B C.

Family Support Institute

  • A province-wide organization that supports families who have a family member with a disability.

Fertility and IVF Programme

Health Link BC

Medical Services Plan of BC

Ministry of Advanced Education

  • Responsible for education services to adults with disabilities

Ministry of Education

Ministry of Health

  • Responsible for ensuring that quality, appropriate and timely health services are available to all British Columbians

Ministry of Housing and Social Development

  • Responsible for education and support payments, work programmes, bus passes and health and dental benefits for persons with disabilities

Physiotherapy Association of BC

PovNet BC (support and advocacy)

Provincial Health Services Authority

  • Responsible for overseeing the coordination and delivery of provincial programmes and highly specialized health care services, including assessment and diagnosis

Provincial Outreach Programmes

  • Provides programming consultation and support to school districts to help meet the educational needs of low-incidence students in BC School Districts

Provincial Services for Deaf and Hard of Hearing

Sunny Hill Health Centre for Children

  • Offers specialized services to children with disabilities, their families and communities throughout British Columbia.  Sunny Hill serves children from birth to 19 years.

Toll-free information lines

Travel Assistance Plan

  • Forms available at referring doctor's office.  Provincial government will pay ferry fares or partial air fare for patient and escort traveling together to an appointment more than 50 miles away requiring ferry or air transport.

Vocational Rehabilitation

Western Institute of the Deaf and Hard of Hearing 

Work Safe BC - Rehab and Return to Work


* Provincial Disability search  

Child Care Subsidy and Disability child care support

Children's Special Services

  • Programme provides services and support to families who may need assistance with some of the extraordinary demands of caring for a child with disabilities.  With supports, families are better able to care for their children at home within their communities, where the children grow and thrive.

Employment and Income Assistance

Income Assistance for Persons with Disabilities

Manitoba Child Benefit

Manitoba Hospice and Palliative Care

Manitoba Health

Manitoba Pharmacare Program (prescription coverage):

Ministry of Education


Services for Persons with Disabilities and Children's Services 

Society for Manitobans with Disabilities

Supported Living Services

  • provide care and accommodation to assist adults with a mental disability to live in the community in their residential option of choice including a family home, independent living and residential care facilities.
  • Day Services - include supported employment and follow up services, services with a vocational focus and personal development services.
  • Support Services - include respite for caregivers, crisis intervention, and other supports required to individuals and families in need.
  • In Company of Friends Program - provides adults with a mental disability the opportunity to create and manage their own services through direct funding. The person receives assistance to make his/her own decisions from their support network of family and friends.

Vocational Rehabilitation

New Brunswick:

 * Provincial Disability search

Chronic Disease Self Management Programme

Department of Education

Designated Disabled Parking

Disability Support Programme

Housing Assistance

New Brunswick Health


Persons with Disabilities framework

Services for Children with Special Needs

Social Assistance

Vocational Rehabilitation Programme

Newfoundland and Labrador:

 * Provincial Disability search

 Newfoundland list of Services and Links for Disabled people

Disability Policy Office


Employment Assistance

Health and Community Services

Independent Living Institute

Job Training and Vocational Rehabilitation services

Learning Disabilities Association

North West Territories:

* Provincial Disability search  

Department of Health and Social Services

  • Department of Health and Social Services
    Government of the Northwest Territories
    Box 1320 Yellowknife, NT X1A 2L9

    Phone: (867) 873-7046 Fax: (867) 873-7706

Education, Culture and Employment

Extended Health benefits for Specified Diseases

Metis Health benefits

Publications for Persons with Disabilities in NWT

Supplementary Health Benefits


Nova Scotia:

* Provincial Disability search  

Community Organization Network

Disability parking

Employment Support and Financial Assistance

Health Department

Hospice / Palliative Care

Nova Scotia Department of Education

Services for Persons with Disabilities

  • Many links on this website


* Provincial Disability search  

Government of Nunavut, Health and Social Services

  • PO Box 1000, Sta. 1000
    Iqaluit, NU
    X0A 0H0
    Ph: (867) 975-5700
  • The Department of Health and Social Services provides a broad range of programs and services in the following areas:

• Primary and acute health, both inpatient and ambulatory
• Child protection
• Family services
• Mental health

Government of Nunavut, Department of Education

Income Support Programme

Social Assistance


* Provincial Disability search  

Ministry of Child and Youth Services

  • 1-866-821-7770 for special needs resources, programs and services
  • Assistance for Children with Severe Disabilities (Mito qualifies)
    • Parents get $25-430 per month to help with costs of such as traveling to doctors and hospitals, special shoes, clothing, parental relief, assistive devices etc. Eligibility is based upon family income.
  • Child care for children with special needs
  • Children with autism
  • Behavioral Management programs
  • Infant development programs
  • Children's rehabilitation services
  • Children's treatment centres
  • Infant Hearing Program
  • Preschool speech and language program
  • Respite services

Special services at home (some mitochondrial diseases covered depending on severity)

Social Assistance in Ontario

  • Ontario Works (OW)
  • Ontario Disability Supports Program (ODSP)
    • The Ontario Disability Support Program Income Support helps people with disabilities who are in financial need pay for living expenses, like food and housing.

Ontario Legal Aid

  • You can call Legal Aid Ontario toll-free at 1-800-668-8258 or 416-979-1446 to speak to a representative. Legal Aid Ontario accepts collect calls.

Ontario Ministry of Education

Ontario Ministry of Health and Long Term Care

Ontario Associations and Organizations

Autism Society Ontario           

Asperger's Society Ontario   

Centre for Childhood disability Research:

Community Networks of Specialized Care:

  • For adults with a developmental disability who need specialized care for co-existing mental health and or behavioral issues.

Erin Oak Kids                                                                                            

  • client Services Intake - 905-855-3557  Toll free 1-877-ERINOAK
  • Clients served in the region of Halton, Peel, Waterloo, or Wellington-Dufferin
  • Workshops
  • Support groups
  • Teen drop -in
  • Autism intervention services
  • Speech, physio, occupational therapy etc.     

Central West Infant Hearing Program 1-866-764-9606

Central West Autism Intervention Services 1-866-7772-7702

Geneva Centre for Autism    

  • 416-322-7877 Toronto
  • Support groups
  • Social skills development
  • Respite
  • Resource lending library
  • School board services

Kerry's place Autism Services

  • 905-457-8711 Brampton
  • Children's and adults
  • Residential program
  • Respite
  • Various workshops
  • Resource library

Learning Disability Assoc.     

  • 416-229-1680 Toronto

Ombudsman Ontario

Ontario Adult Autism Research and Support Network

Ontario Association of Children's Rehabilitation Services

Ontario Early Years Centers:             

  • Preschool programs and resources offered to both Halton and Peel Regions

Ontario Trillium Foundation

ROCK Reach Out Center for Kids

  • 471 Pearl St. Burlington, ON
  • 905-634-2347
  • wide range of services from individual counseling, support of families with various mental disorders and  also provides OHIP covered assessments.

The Ontario Camping Association 

  • maintains a list of special needs camps that meet and maintain high provincial standards for children with various disabilities and disorders.

Vocational Rehabilitation - March of Dimes

Government of Prince Edward Island:

* Provincial Disability search  

Government of Prince Edward Island

Community Services, Seniors and Labour

Education and Early Childhood Development

Disability Support Programme

Disability Parking permit

Health and Wellness

Supports for People with Disabilities

Vocational Rehabilitation


Government of Quebec:

*Provincial Disability search  

Chronic Disease Self Management Programme

Disability Information - tax

Disability Supports Deduction


Employment Insurance (maternity, parental and sickness) - Quebec

Quebec Health Care


Government of Saskatchewan:

* Provincial Disability search  

Child Care Subsidy Programme

Department of Health

Employability Assistance for People with Disabilities

First Nations and Metis Services Telephone: (306) 787-3949

Housing for Persons with Disabilities

  • Financial assistance allows homeowners and owners of rental properties to improve their dwellings so that they are more accessible to persons with disabilities

Office of Disability Issues

  • Has a direct working relationship with other government ministries, the disability community and the public

Parking Programme

Persons with Disabilities Online

Saskatchewan Assistance

  • Information on programmes and services for families and individuals who, for various reasons, cannot meet basic living costs

Saskatchewan Assured Income for Disability (.pdf file)

Saskatchewan Employment Supplement

Saskatchewan Public Policy on Disabilities

Saskatchewan Rental Housing Supplement

Government of Yukon:

* Provincial Disability search  

Community directory for special needs

Ministry of Education

Services for people with disabilities

Yukon Health Guide

Yukon Health and Social Services

  • Telephone: (867) 667-3002

Yukon government

Organizations granting wishes

 The Children's Wish Foundation of Canada

            95 Bayly Street, Suite 404 Ajax, Ontario Canada L1S 7K8

Phone: (905) 426-5656

Fax: (905) 426-4111

The national office for the Children's Wish Foundation of Canada.

This organization with 12 provincial Chapter Offices from coast to coast is dedicated to fulfilling a favorite wish for children afflicted with a high risk, life-threatening illness.  Parents can contact the national office for the chapter closest to them. The goal of the foundation is to provide a once in a lifetime experience for children suffering from high risk life-threatening diseases. Children are eligible from 3 years of age and over but under the age of 18 years before the time the request is received.

Children's Wish will fulfill the favourite wish for any child not expected to reach age 18.  Wach wish, truly the child's own, must be completed while the child is healthy enough to enjoy it.  The immediate family is included in the wish fulfillment, so that the child and family will share in the experience and create happy memories together.

  • 1-800-323-WISH

For children under age 3 (chronologically or cognitively)


Make-a-Wish Foundation of Canada

This organization, which serves various regions in Canada seeks to fulfill the special wishes of children under the age of 18 who have life-threatening illnesses.

Starlight Children's Foundation

This organization is dedicated to brightening the lives of seriously ill children through wish granting and state-of-the-art in-hospital entertainment. It has a network of chapters located in the United States, the United Kingdom, Australia, and Canada

 Sunshine Foundation of Canada   

This foundation allows children with a severe physical disability or life-threatening illness to have a chance to see their once-in-a-lifetime dream come true. 


Tender Wishes-Canada

This organization grants wishes to children between the ages of 2 and 18, who have a life-threatening illness, and reside in the Regional Municipality of Niagara, Ontario.

Second Wind Dreams


A non-profit organization that grants wishes to older adults living in eldercare facilities or in hospice care. They have granted wishes throughout the United States, Canada as well as India.

Make a Wish Foundation International


Grants wishes to children with a life-threatening medical condition up until the age of 18 in 28 countries and regions outside of the United States.

The Rainbow Society of Alberta

6604 82nd Avenue
Edmonton, Alberta, Canada T6B0E7
Phone: 780-469-3306


Hospitals and / or Mitochondrial Clinics 



Inherited Metabolic Disorders Clinic

Alberta Children's Hospital,  

2888 Shaganappi Trail NW, Calgary, Alberta, T3B 6A8 

Phone: (403) 955-5030
Fax: (403) 955-3091

Sees adults as well; covers southern Alberta, southeastern British Columbia and southwestern Saskatchewan

British Columbia 

Centre for Biomedical Research, University of Victoria

Child and Family Research Institute

Room C 234, 4500 Oak Street

Vancouver BC V6H 3N1

Vancouver General Hospital

Provincial Adult Metabolic Clinic

  • Vancouver General Hospital,  Diamond Health Care Centre
  • 4th Floor, 2775 Laurel Street,  Vancouver, B. C. V5Z 1M9
  • Tel.: 604-875-4111 ext 61323                  Fax: 604-875-5967 
  • Dr. Sandra Sirrs - endocrinology
  • Dr. Michelle Mezei - neurology
  • Dr Andre Mattman - biochemistry

Westside Integrated Health Centre

  • 130 - 180 Wilson Street,   Victoria, BC    V9A 7N6
  • Tel.: 250-385-5255
  • Dr. Andrew Penn - neurology
  • Sees adults


Health Sciences Centre

  • 2nd and 3rd floor, Community Services Building
  • 685 William Avenue,  Winnipeg, Manitoba            R3A 1R9          
  • Tel: 204-787-2494
  • Fax: 204-787-1419        

Genetics and Metabolism

  • Dr Cheryl Rockman - Greenburg
  • Dr Aziz Mhanni

Maritime Provinces (New Brunswick, Newfoundland, Nova Scotia, Prince Edward Island)

  • Maritime provinces are served by Nova Scotia 
  • Outreach clinics are held in Summerside and Charlottetown, Prince Edward Island, and in Fredericton, New Brunswick. Tele-health is extensively used for counselling patients from across the Maritimes, who would otherwise have to travel great distances to be seen in Halifax. 

 IWK Health Centre Foundation       

Maritime Medical Genetics

  • 5850 / 5980 University Avenue, P. O. Box 9700.  Halifax, NS         B3K 6R8
  • Phone: 902 470 8754
  • Fax:     902 470 8709

Northern Territories (North West Territories, Nunavut, Yukon)


Served by Health Sciences Centre in Winnipeg, Manitoba


Kingston General Hospital 

Genetics Clinic

  • 20 Barrie Street, Kingston,          ON K7M 3J6,
  • Tel: 613-533-6310,

London Children's Hospital (London, ON)

Centre for Inherited Metabolic Disorders

London Health Sciences Centre

Victoria Hospital

  • Zone E, Level 5 (old Westminster Tower)

800 Commissioners Road East, London, Ontario              N6A 5W9

  • Children's Hospital 519-685-8500

  • Patient Information: 519 663-3163
    Media Relations: 519-667-6760
    Patient Relations: 519-685-8500
  • Narayan Prasad - Neurometabolic Sp
  • Dr Charles (Tony) Rupar - Biochemical Genetics Sp
  • Dr. Sharon Goobie


McMaster Children's Hospital (Hamilton/Niagara)

  • Ph: 905-521-2100 x 75226
  • sees adults and children


North York General Hospital (Toronto)

Genetics Programme


  • North York General Hospital
    4001 Leslie Street,  Toronto, Ontario        M2K 1E1
  • Main phone number: (416) 756-6000

    Branson Site
    555 Finch Ave. West,  Toronto, Ontario    M2R 1N5
    Main phone number: (416) 633-9420

    Seniors' Health Centre
    2 Buchan Court,  Toronto, Ontario           M2J 5A3

  • Long-term care home: (416) 756-0066
    Specialized Geriatric Services: (416) 756-6050 ext. 8060


Children's Hospital of Eastern Ontario (Ottawa)

Department of Genetics, Children's Hospital of Eastern Ontario,

  • 401 Smyth Road, Ottawa,ON      K1H 8L1
  • Tel:  613-737-2275
  • Fax: 613-738-4822

Toronto General Hospital

  • University Health Network

Adult Genetics Programme, Toronto General Hospital;3

  • 200 Elizabeth Street, Toronto,     ON M5G 2C4,
  • Tel: 416-340-4800          Ext 6632,
  • Fax: 416-340-3709

Toronto Hospital for Sick Children (Toronto)

The Hospital for Sick Children, Division of Clinical and Metabolic Genetics

555 University Avenue, Toronto, Ontario               M5G 1X8

Tel: 416-813-6390

Fax: 416-813-5345




CHUL Ste Foy

  • Serves children
  • 2705 Boul Laurier, Ste Foy, Quebec City, Quebec   G1V 4G2
  • Tel: 418-656-4141
  • Dr. Bruno Maranda, medical geneticist
  • Dr. Helene Roy, paediatrician
  • Dr. Julie LaFlame

Montreal Neurological Institute & Hospital 

Neurology Dept.

  • Serves adults
  • 3801 University Street
    Montreal QC H3A 2B4
  • Tel: (514) 398-5262                    Fax: (514) 398-8310

Ste. Justine Hospital

  • 3175, Chemin de la Côte-Sainte-Catherine
    Montreal, Quebec
    Canada, H3T 1C5
  • Tel:  (514) 345-4931
  • Metabolic and Genetic Diseases
  • Serves children 
  • Tel:  514-412-4418                     Fax:  514-412-4329
  • Dr Serge Melancon
  • Dr Grant Mitchell


  • Serviced by Alberta

Inherited Metabolic Disorders Clinic

Alberta Children's Hospital, Inherited Metabolic Disorders Clinic (Calgary, AB)

  • 2888 Shaganappi Trail NW, Calgary, Alberta, T3B 6A8 
  • Phone: (403) 955-7587
    Fax: (403) 955-3091

Sees adults as well; covers southern Alberta, southeastern British Columbia and southwestern Saskatchewan

Mitoaction wishes to thank the following Canadians who provided the information to make these resources available to Canadian Mitochondrial Disease patients and their families:

  • Jean Shepherd
  • Carolyn Slizys-Scholey
  • Cindy Baldassi
  • Ken Graham
  • Matthew Graham
  • Mrs M. O'Riley
  • Janice Dodds

 Doctor Information

  • Lidia Marandola
  • Sarah Boucher
  • Dr M. Tarnopolski
  • Dr S. Sirrs
  • Dr A. Mattman
  • Ms W. Faulk
  • Cynthia Bertani