FOP affects just 1 in 2 million people. This means it’s an ultra-rare disease. It’s one of the cruellest and most disabling conditions known to medicine. There is no known treatment or cure although current clinical trials are proving we do have hope in the future. Share our social media posts on Rare Disease Day...
Raise awareness by getting your school, workplace, local community to take part in our #FunFeet4FOP campaign. Snazzy socks, wacky wellies, pets in slippers, eye-catching pedis – it doesn’t matter how you pose as long as you have fun feet & toes! Snap a photo of your funky feet & help those with FOP.
CANCELLED In line with UK Government guidelines in response to the global pandemic, the trustees took the difficult but necessary decision to cancel the 2020 Conference in May. We will await further advice on whe it is safe to hold public gatherings once again, and will keep people aware. We are hoping to share some...
We have places on our Great North Run team, and we would love for you to get involved! The Great North Run is the largest half marathon in the world, taking place in Newcastle upon Tyne.
Sign up your school or workplace for Jeans for Genes Day 2020. Help raise money and awareness for everyone living with a rare genetic condition.
FOP affects just 1 in 1.4 million people. This means it’s an ultra-rare disease. It’s one of the cruellest and most disabling conditions known to medicine. There is no known treatment or cure although current clinical trials are proving we do have hope in the future. Share our social media posts on Rare Disease Day...
Our third Family Activity Weekend Break will take place and the destination will again be Center Parcs, Sherwood Forest, Nottinghamshire; a prime location for travel across a wide geographic area. Subject to us securing grants to cover the cost of the Weekend, the proposed dates are: Friday 12th - Monday 15th March 2021.
