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.
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.
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:
- Providing patients and families with bespoke support tailored to their needs, from point of diagnosis through to young people’s transition adulthood and beyond
- Connecting families worldwide to reduce isolation and enable them to share experiences
- Funding research to develop treatments and support early diagnosis
- Working closely with medical professionals to stay ahead in innovations such as newborn screening and treatments
- Raising awareness of these conditions amongst the medical, health, social care and teaching professions, as well as the general public
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.
In 1994, Jen’s Dad Peter was awarded the OBE for services to the charity, and in 1995 it was invited to represent patients at a workshop in Brussels to discuss establishing European orphan drug legislation. Two years later, it joined forces with other patient groups across Europe to form EURORDIS to advocate for the establishment of the Orphan Drug Regulation, which finally passed into European Law in 1999.
Jen’s Mum Lesley was elected as a founder director of EURORDIS and acted as its president from 2001-2003. A few years later, Lesley joined the Committee for Orphan Medicinal Products (COMP) at the European Medicines Agency to continue advocating for the promotion of safe and effective drugs for patients with rare and metabolic diseases.
Jennifer, although initially given only a short time to live, fought on after a kidney transplant to achieve a university degree and began teacher training in 2005. Cured of cancer twice through outstanding treatment and support by the NHS she sadly passed away in 2007.
Today, Metabolic Support UK is the leading umbrella patient organisation for all Inherited Metabolic Disorders, and continues to be committed to improving the lives of those affected, keeping Jen’s legacy alive.