Upcoming Events

Latest Past Events

FOP Family Weekend Break

Center Parcs, Sherwood Forest Newark

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....

Rare Disease Day

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...

Jeans for Genes Day 2020

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.