Helpful Links & Resources

Please use this page to find all the resources, forms, and all related helpful information on Friedreich’s Ataxia. This page is dedicated to keeping the community up to date with all the latest resources including, but not limited to helpful links, community groups, and the latest research pipelines and drug trials.

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Helpful Links & Resources

These links and support groups are included to help eligible individuals find the help & support they need. Please check back, as we will be updating this often.

Government of Ontario – Disability Support Program (ODSP)

Offers financial assistance and employment supports to eligible individuals with disabilities who are in financial need.

March of Dimes Canada

Offers a variety of funded programs and services for people with physical disabilities.

Friedreich’s Ataxia Parents’, Family and Friends Group (Facebook)

A private networking group for family, friends, relatives of individuals with F.A to connect with each other for friendship and support.

The Ontario Caregiver Organization

Caregiver support program that offers help with mental health and well-being, tools for managing care and specialized equipment, and financial grants to help unpaid caregivers who are supporting adults living with disabilities.

Special Access Program

The Special Access Program (SAP) is an initiative that allows a health care professional to request a drug that is not available for sale in Canada for treating a patient with a serious or life-threatening condition where conventional treatments have failed, are unsuitable, or are not available in Canada. Health Canada will review the application and based on the clinical information package provided by the pharmaceutical company at the onset of its submission to the program, Health Canada may authorize its release. If Health Canada approves the drug for sale into Canada, the final decision lands with the pharmaceutical company and if they approve it, there could be fees linked to receiving the medication. It should be noted that the pharmaceutical company is not compelled to provide the drug even if Health Canada has approved it.

 

Form for Medical Practitioner to use:

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Friedreich’s Ataxia Research Pipeline

These links are dedicated to the latest research and related news including clinical trials and drug development

Research & Clinical Trials

Offers financial assistance and employment supports to eligible individuals with disabilities who are in financial need.

Drug Development & Progression Stage