On 15th July 2020, Findacure was joined by Naomi Litchfield of Bionical Emas, Josie Godfrey of Metabolic Support UK and Liz Ryburn of Spinal Muscular Atrophy UK for a collaborative webinar that focused around Early Access Programmes (EAPs) and how patient groups could partake in them.
Heather was diagnosed with Fibrous Dysplasia at 10 years old. She has had multiple operations throughout her life and manages her own chronic pain. She also has problems with her thyroid, fatigue and spine. Heather joined FDSSUK as a member around 10 years ago, hoping to learn more about the disease and meet other patients. Heather now volunteers for FDSSUK and is the secretary. She is very passionate about raising awareness of the disease, and enjoys being part of a community that allows her to interact with other patients and carers. This is her lockdown story!
When it comes to the inherent nature of drugs, we believe that they aren’t inherently good or inherently evil; it’s the context that matters and defines their usage. See how the drugs, thalidomide and sodium valproate, have danced between being called Dr. Jekyll and Mr. Hyde, depending on the context of their usage, and discover the lessons learned from this tale of two contexts.