International Fibrodysplasia Ossificans Progressiva Awareness Day is on April 23: Spreading Rare Disease Awareness

International Fibrodysplasia Ossificans Progressiva (FOP) Awareness Day is recognized each year on April 23rd. This is a time for spreading awareness about this rare disorder among both the general public and the medical community. This date was selected because it was on April 23 sixteen years ago that the gene for the disorder, called ACVR1, was first discovered. A total of 15 FOP-related organizations from around the world will be participating in the awareness day.

About Fibrodysplasia Ossificans Progressiva

Fibrodysplasia ossificans progressiva (FOP) is an extremely rare, severe, and unusual disease. It is characterized by the abnormal transformation of damaged soft tissue into bone. This process is known as ossification. It is the only known medical phenomena in which one organ system is changed into another. It is incredibly rare, with less than 1,000 confirmed cases worldwide. Fibrodysplasia ossificans progressiva is caused by a mutation that affects a gene responsible for tissue repair. This mutation often appears spontaneously and is rarely passed down. Signs and symptoms include deformed big toes at birth, tumor-like lumps, and the slow transformation of soft tissue in bone, which is usually triggered by a flare-up that appears before age ten. The transformation of tissue into bone usually begins from the neck and spreads downward over the years. Patients eventually lose mobility almost entirely, becoming frozen in position. There is no known treatment. Life expectancy is around 40 years. To learn more about fibrodysplasia ossificans progressiva, click here.

Get Involved

It’s easy to help spread awareness on International FOP Awareness Day. You can always pick up awareness day merch, like a hoodie or T-shirt, that can spread awareness and support the community financially at the same time. Place your order here. Additionally, donations made during April will count double due to a generous matching donor. Click here if you are ready to contribute.

You can also download an FOP awareness profile picture for Instagram or Facebook and put it on your profile. Check them out here.

Use the FOP Awareness Challenge Calendar to post on social media various facts, story shares, and general encouragement to the community. Click here to download the calendar and start participating today.

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