TK2d
resources
Because TK2d is so rare, creating and becoming a part of the community is important to help you stay informed, connected, and motivated.
Below are links to patient advocacy groups and community pages, as well as sites that have information about TK2d and can help you discuss and understand TK2d and mitochondrial disorders.
We hope to add more information here as new resources are created, so be sure to bookmark this page and check for updates.
Because TK2d is so rare, creating and becoming a part of the community is important to help you stay informed, connected, and motivated.
Below are links to patient advocacy groups and community pages, as well as sites that have information about TK2d and can help you discuss and understand TK2d and mitochondrial disorders.
We hope to add more information here as new resources are created, so be sure to bookmark this page and check for updates.
Finding a doctor
Use the database to find an expert in mitochondrial disease who may help you get diagnosed or can provide care.
Meet people living with TK2d
Hear from people living with TK2d to learn more about their experiences and the impact of this disease.
Learn more about TK2d
Find the answers to frequently asked questions about TK2d all on one fact sheet.
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share
A helpful resource for the TK2d community
Download to learn more about the cause of TK2d, symptoms, diagnosis, disease management, a multidisciplinary healthcare team approach, and patient community organizations and resources.
Patient advocacy groups
The UMDF promotes research and education for the diagnosis, treatment, and cure of mitochondrial diseases like TK2d.UMDF.org UMDF Organization Facebook Page UMDF Patient Support Facebook Group Join the TK2d support group by emailing margaret.moore@umdf.org Learn more about upcoming UMDF events and patient resources Learn about a worldwide, patient-initiated registry called mitoSHARE
MitoAction works to improve the quality of life for people living with mitochondrial diseases and their families.
mitoaction.org
MitoAction Resources and Mobile App
MitoAction Facebook Page
MitoAction international hotline:
- 1-888-MITO-411
- mito411@mitoaction.org
MitoPatients is an international organization that aims to improve the quality of life for people with mitochondrial diseases by fostering communication and collaboration across the world.mitopatients.org
The MDA provides support and resources for people living with muscular dystrophy, amyotrophic lateral sclerosis (ALS), and neuromuscular diseases such as TK2d.MDA.org Medical Equipment Assistance MDA Access Workshops
A key piece of advice I'd give to those navigating the maze that is primary mitochondrial myopathy is that you are your own best advocate.
Understanding medical words & terms
Genetics Home Reference
Patient-friendly information about genetic conditions provided by the US National Library of Medicine.
Visit site
What Did My Doctor Say?
Aims to help health consumers and patients understand "medspeak."
Visit site
Talking Glossary of Genetic Terms
Created to help everyone understand the terms and concepts used in genetic research. Many definitions include images, animations, and links to related terms.
Visit site
National Society of Genetic Counselors Glossary
A genetics-based glossary.
Visit site
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