On April 23, 2023, people around the globe will celebrate Fibrodysplasia Ossificans Progressiva (FOP) Awareness Day. April 23 marks the 17th anniversary of when scientists shared that they had discovered ACVR1, the gene which causes FOP. Normally, ACVR1 plays a role in the promotion and control of bone growth. Mutations within this gene cause FOP, a rare disorder in which muscles, ligaments, and tendons become ossified (replaced by bone).
On FOP Awareness Day, we join with the greater community to raise FOP awareness, advocate for increased research and funding, and spread the stories of those affected. Of course, we also encourage others to get involved. Our voices are stronger together. If you’re looking for ways to join in on FOP Awareness Day, we’ve got you covered:
- Donate to the cause. Misdiagnosis of rare conditions like FOP can be isolating and harmful, subjecting people to improper or unsafe procedures. Increased research and resources can combat this by reducing misdiagnosis and ensuring that people get effective care at the right time. The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) announced that the first $50K in donations will be matched. You can donate here.
- Share stories. Head to your social media and look up hashtags like #FOP, #FOPAwarenessDay, and #FibrodysplasiaOssificansProgressiva. When people share their stories, really listen to what they have to say. Repost or share the stories that impacted you and help to amplify the voices within this community.
- Contact the media. If you’d like to raise FOP awareness locally, consider writing to your local media outlets. Send along information on FOP or stories that might be of interest to cover.
Have other ideas on how to get involved? Send us a tweet and let us know!
What is Fibrodysplasia Ossificans Progressiva (FOP)?
An estimated 1 in every 1,600,000 infants is born with fibrodyslasia ossificans progressiva. This rare disorder is characterized by the transformation of tissue into bone. Typically, ossification first begins near the neck or shoulders before progressing to the rest of the body. Symptoms and characteristics of FOP may include:
- Congenital malformation of the big toe and/or thumbs
- Restricted movement and mobility
- Progressive pain and stiffness
- Chronic inflammation
- Kyphosis or scoliosis
- Entrapment neuropathy
- Impaired hearing
- Microdactyly (abnormally short fingers and toes)
There are no cures for FOP, but treatment options may be used. For example, muscle relaxants and corticosteroids can ease pain and swelling; surgery may be used for the removal of excessive ossified tissue.
