April 23 is International FOP Awareness Day: Spreading Rare Disease Awareness

The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is gearing up to recognize International FOP Awareness Day this year on April 23, 2021. The event is meant to help spread awareness about FOP among the medical field and the general public. April 23 was selected as the date because it was on this day that the genetic mutation known to cause the disease was first discovered in 2006. This discovery was considered a major sign of progress for the FOP community.

About Fibrodysplasia Ossificans Progressiva (FOP)

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. FOP 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 FOP, click here.

How to Get Involved

IFOPA has come up with several ways that you can participate in spreading awareness about FOP. The organization has been posting facts on its social media all month long leading up to the big day. Click here to find links to their social media pages. You can get involved too as part of the 23 Days of FOP Awareness Challenge.

IFOPA also has a profile picture frame that you can add on Facebook. Click here if you want to use it.

The group also has a Bonfire store with awareness T-shirts for sale. Proceeds will help support the organization’s mission.

IFOPA is also in the midst of a FOP Awareness Day fundraising campaign, and thanks to a generous donor, all donations up to $40,000 will be matched, effectively doubling your contribution. Click here to donate.

 

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