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Date and Time

Tue, 13th Feb 2024, 5:30pm

to Tue, 13th Feb 2024, 9:00pm



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Medics4RareDiseases and FOP Friends, in collaboration with the Hunterian Museum at the Royal College of Surgeons of England, are hosting an evening reception on 13 February, for healthcare professionals, examining the contributions of patients and families to medical advances in Fibrodysplasia Ossificans Progressiva (FOP).

Find out how patient advocacy can change the course of rare genetic conditions and how basic principles of good clinical care can make all the difference to rare patients both now and in the future.

FOP is just one example of a rare genetic bone condition that has been familiar to medicine for hundreds of years but is not familiar to the average healthcare professional because it impacts one in a million people.

Also like many rare conditions, what we do know about FOP is largely thanks to patients and families who have given their time, stories, samples and bodies to the pursuit of improving the outlook of those with FOP in the future.

You will hear patient stories from the 18th Century to the present day. Talks by people who live with FOP as well as advocates and clinicians who have been pivotal in improving life for those living with FOP today and developing treatments in the future.

Find out more about the speakers and how to register for the event on the event page.