Published on: 11th April 2024
On 11 May, members of RNOH Metabolic Services will be attending the 5th Conference and Family Gathering in Manchester hosted by FOP Friends, the UK charity that supports and connect people with FOP (Fibrodysplasia Ossificans Progressiva) and their families.
As a charity, FOP Friends regularly advocate for people, liaising with a number of different healthcare professionals, educational bodies, and other agencies, to ensure that the people affected by FOP get the services they need. Learn more about their amazing work and donate here: https://fopfriends.com/
FOP is one of the rarest and most disabling genetic conditions known to medicine. It is the only known condition where the body changes one organ into another. Soft tissue turns into hard bone, creating a second skeleton. Currently there is no treatment or cure. There are around 70 known people with FOP in the UK, and only 900 worldwide.
On the day, Prof Richard Keen, Dr Judith Bubbear and CNS, Martin Dudley, from RNOH, will be attending, offering free clinical appointments and private consultation time for people with FOP and their carers/families.