FOP Awareness Month
Raising awareness for a rare condition, efforts unite to support those facing the challenges of Fibrodysplasia ossificans progressiva.
Partner with medical organizations and patient advocacy groups to educate parents and healthcare providers on FOP early detection signs during April awareness month.
- Fun Feet 4 FOP social campaign: encourage followers to share photos of fun socks/shoes to raise awareness while highlighting the key diagnostic feature
- Educational infographic on FOP early warning signs (shortened/turned-in toes, unexplained swelling) for parents and pediatricians
- Patient story spotlight: amplify voices of those living with FOP to build empathy and understanding within healthcare communities
FOP Awareness Month is sponsored by the FOP Friends organization as well as the International Fibrodysplasia Ossificans Progressiva Association (IFOPA), with the purpose of spreading the word about this condition and building understanding. The event starts on the first of April and runs until the 23rd of the month to coincide with the announcement of the discovery of the ACVR1 gene, which is responsible for FOP, which is also celebrated as FOP Awareness Day.
While there is no readily available treatment or cure for this condition, early detection of the disease is vital because its progression can be aggravated by any kind of bump, injury, trauma or surgery. That’s why it is so vital for parents and doctors to be aware of the signs of FOP so that they don’t live with it undiagnosed. Since the discovery of the ACVR1 gene in 2006, genetic testing has been a vital part of the diagnosis of this medical condition.
Learn the Signs of FOP
One of the best ways to get involved with FOP Awareness Month is to get more educated about the facts behind this condition. It is important to know that the most common indication for FOP is toes that are shortened and turned in, along with unexplained incidences of swelling. If these symptoms are noted in a child, it is vital to get more informed and have them seen by a medical professional and see if it is necessary to have genetic testing done.
Attend an FOP Awareness Month Event
The FOP Friends organization hosts various events and campaigns in honor of FOP Awareness Month and FOP Awareness Day (April 23). One fun online event that has been running for several years is the Fun Feet 4 FOP. This event raises awareness for the condition by encouraging people to connect together online by sharing photos of their feet in fun socks, silly shoes or even painted! Highlighting the key diagnostic feature of toes, this event is a fun way to build knowledge and spread information about FOP. Learn Facts About FOPStay connected with FOP Awareness Day by learning a few facts about this disease. Consider some of these to get started:FOP is estimated to affect approximately 1 in 1 million people worldwide.Though FOP is a genetic condition, it typically does not come from either parent and is a mutation or accident of nature.The process of FOP creating bone adds to the skeletal structure of a person, causing painful flare-ups of bumps and new bone growth throughout the body.