2021 MitoCanada Community Survey
We need your energy to reduce the devastating impact of mitochondrial disease. We hope to do this by incorporating your experience, insights and ideas. Please share your experience and insights by completing the confidential MitoCanada Discovery Survey.
Your Voice Matters | Mitochondrial Replacement Therapy
MRT is a new type of in vitro fertilization that aims to prevent the transmission of mitochondrial diseases by replacing mutated mitochondrial DNA in unfertilized oocytes or zygotes with normal mitochondria from a healthy donor. Your thoughts on this topic are important and matter, we want to hear from you.
Read MoreMy name is Forough and I am a PhD student in the Department of Human Genetics at McGill University in Montreal.
I work at the Centre of Genomics and Policy (CGP) and my research revolves around ethical, societal and regulatory aspects of genome editing technologies, and more particularly Mitochondrial Replacement Therapy (MRT).
MRT in Canada is considered a criminal offence according to article 5(1)(f) of the Assisted Human Reproduction Act (2004) which prohibits any practice that modifies the genome of “a human being or in vitro embryo such that the alteration is capable of being transmitted to descendants.” I would like to talk to you in order to identify and address multiple, inter-related questions pertaining to policy and decision-making for preventing mitochondrial diseases in Canada.
If you are interested in sharing your story, please contact me for more details at: firstname.lastname@example.org
All the best, Forough Noohi
MitoCanada has a Peer2Peer Facebook support page with over 60 members. People can communicate within this closed group to ask questions, find resources or to connect with each other.
MitoAction | Weekly Support Groups
Get support via these weekly teleconferences for newly diagnosed patients, parents, adult patients and spouses. There are also regular Mito-Autism calls.
Gain knowledge through the recordings of monthly toll-free teleconferences with expert speakers on topics important to the Mito community. There are more than 100 presentations available with audio resources, slides, and written summaries.
Mito411 – MitoAction
MitoAction-Mito411 offers live, one to one support, education, advocacy, and a direct connection with someone who understands. Mito411 volunteers speak with callers needing support and share similar experiences on how to live day to day with mito.
MitoCanada has prioritized establishing a similar Mito411 service. If you are interested in becoming a Support volunteer, please contact us at email@example.com
The summer of 2018 welcomed the launch of the very first mitochondrial tracking app. This unique platform will help patients and families manage the complexities of day-to-day care of mitochondrial disease, as well as facilitate patient-physician communications.
Relay Health is an online portal for patients and healthcare teams to securely communicate and collaborate about any health matter, share vital health information, including documents.