25 Sep, 202325th September 2023
A cure is near, but we need to keep research funded to perfect it in time for those with Fibrodysplasia Ossificans Progressiva (FOP). Hope rests with people like you, people who care.
House of Commons Parliamentary Debate for Research into FOP
Thanks to the support of our families, friends and supporters, we reached the required 100,000 signatures required to have a debate at the Houses of Parliament, London. A full Commons debate was held on Thursday 7th September. Chris and Oliver, along with ALex, Dave and Lexi Robins, attended the debate and went to Number 10 Downing Street to hand the petition over.
During the debate, FOP was explained to the House, along with the challenges and difficulties those living with FOP face. The Rt. Hon. Sir Mike Penning, who brought the debate to the House, asked the government to fund further research into FOP.
The government set out its Rare Disease strategy. It thanked FOP Friends for bringing awareness of FOP to the House, and promised further meetings to discuss ways they can support research into FOP.
We are thankful to the Members of Parliament who stood up and spoke on behalf of their constituents, and also to everyone who played their own small part in making this a really big day for everyone affected by FOP in the UK.
You can watch the debate in full here:
What is FOP?
FOP is one of the rarest and most disabling genetic conditions known to medicine. It affects around 1 in a million births. It is characterised by shortened big toes and unusual swellings across the body.
Who are FOP Friends?
FOP Friends is the UK’s only charity which is dedicated to supporting people living with FOP and their families. We actively fundraise to support the research into a treatment and a cure for FOP. It is run by families which are directly affected by FOP.
FOP Friends’ aim is to further research into FOP by supporting current and future research projects. Our goal: to cure FOP.
Living with FOP
FOP is a disabling condition that can significantly impact a person’s life. Progression of FOP is extremely variable, with no way of knowing when a flare-up is going to occur. Although there is no current treatment for FOP, there are a number of precautions people living with FOP can take to help manage the condition and potentially lessen the risk of a flare-up or fall-out from FOP.
What is POH?
Progressiva osseous heteroplasia, or POH, is often considered a ‘sister’ condition of FOP, due to some similarities the conditions share. It is even rarer than FOP so there are even fewer families in the UK affected. The specialists who treat our patients with FOP also care for those with POH.
We welcome those who are affected by POH to our small but special community.
Covid continues to be a real concern for those living with FOP, POH and many other health conditions. Click here for the latest medical advice for people living with FOP, from the International Clinical Council for FOP.
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