September 13-19 is Mitochondrial Disease Awareness Week: Spreading Rare Disease Awareness

The third week of September is recognized annually as Mitochondrial Disease Awareness Week. This global event is held in order to increase awareness of mitochondrial disease in the medical community and among the general public. Mitochondrial diseases are a rare group of disorders that are under-researched and have very limited treatment options. 

About Mitochondrial Diseases

Mitochondrial diseases are a group of genetic disorders that causes the mitochondria not to function properly. The mitochondria are an essential organelle that is found in most types of cells in the body, with red blood cells being the only exception. They are responsible for generating energy for the cell. Mitochondrial diseases are usually caused by mutations of the mitochondrial DNA or the nuclear DNA. Symptoms tend to be the worst when the issue affects cells that use a lot of energy, such as the muscles or parts of the brain. These symptoms affect many aspects of bodily function and include poor growth, poor muscle coordination, dementia, neurological issues, muscle weakness, breathing disorders, vision problems, digestive disorders, hearing problems, disease of the kidney, liver, and heart, and learning disabilities. Treatment options are limited in number and in their effectiveness. To learn more about mitochondrial diseases, click here.

Get Involved

There are a variety of ways that you can help spread awareness about these disorders during the week. Some examples provided by the United Mitochondrial Disease Foundation (UMDF) include:

  • Reach out to local media. This a time-tested method that can help spread awareness in your community.
  • Start a fundraiser. Raising money for the patient community it a great way to spread awareness. Create a page for your campaign here to get started.
  • Participate in an Energy for Life Walkathon. These events (being held virtually because of COVID-19) will be held in different cities throughout the fall. Click here to learn more.
  • Share posts from the UMDF on social media. Check them out on Twitter, Facebook, and Instagram.

Don’t miss this opportunity to pitch in and help spread rare disease awareness.

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