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.
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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...
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.