London Marathon 2019

[p][b]Metabolic Support UK (formally known as Climb) was inspired by Jennifer Rachel Greene who was born on 8th December 1978 with a rare Inherited Metabolic Disorder called Cystinosis.[/b][/p][p] Finding little support and information available following this devastating diagnosis Jen’s parents, Peter and Lesley Greene – with help from family, friends and the medical profession registered the charity, initially called Research Trust for Metabolic Diseases in Children (RTMDC) encompassing all Inherited Metabolic Disorders, in November 1981.[/p][p] The aims of the charity remain as true today as in 1981, whilst evolving with the changing landscape of the rare disease community. The small and dedicated team work hard to:[/p][p] Providing patients and families with bespoke support tailored to their needs, from point of diagnosis through to young people’s transition adulthood and beyond[/p][p]Connecting families worldwide to reduce isolation and enable them to share experiences[/p][p]Funding research to develop treatments and support early diagnosis[/p][p]Working closely with medical professionals to stay ahead in innovations such as newborn screening and treatments[/p][p]Raising awareness of these conditions amongst the medical, health, social care and teaching professions, as well as the general public[/p][p] Since launching, Metabolic Support UK’s work and reputation has spread from the UK to Europe and beyond, becoming part of a worldwide collaborative network of groups with similar aims. The charity paved the way and opened discussions to encourage research and development of medicines for rare diseases known as Orphan Drugs.[/p]