METABOLIC SUPPORT UK

Children Living with Inherited Metabolic Diseases

£6,055

Raised so far

  • 41 Donors
  • 3 Fundraisers

About us

Metabolic Support UK (formally known as Climb - Children Living with Inherited Metabolic Disorders) has been the leading umbrella patient organisation for all Inherited Metabolic Disorders since 1981.

Lesley and Peter Greene founded the charity in November 1981 in Nantwich, Cheshire, inspired by their daughter, Jennifer (1978-2007) who was born with Cystinosis, an ultra rare Inherited Metabolic Disorder. Finding little information and support available following this devastating diagnosis, Lesley and Peter – with help from friends, family and the medical profession – launched the charity, encompassing all known metabolic disorders.

Since then the charity has built its reputation by supporting patients and their families, signposting to the best experts, working closely with medical professionals worldwide, raising awareness and funding research, providing much needed hope for the future.

There are approximately 20,000 people living with Inherited Metabolic Disorders in the UK, and 3.5 million worldwide. We continue to be committed to the aims of the founding family, keeping Jennifer’s legacy alive

Metabolic Support UK. Your rare condition. Our common fight.

What are we fighting for? A better life for those living with Inherited Metabolic Disorders and their families. We do this by:

  • Ensuring that patients of all ages and their families are supported with all of their needs
  • Collaborating with other patient organisations and medical professionals to ensure that patients and families have the right support and care, at the right time
  • Providing opportunities for patients and families to come together to support each other and share experiences
  • Holding conferences, workshops and education days for patients, families, medical and health professionals
  • Raising awareness, and providing patients and families with a platform to share their stories
  • Working closely with industry specialists to share the latest news and developments in the Inherited Metabolic Disorder world
  • Supporting and funding research into the latest treatments and therapies, as well as the impact of living with Inherited Metabolic Disorders
  • Working to improve diagnosis and standardise the information provided in the process, by championing the extended newborn screening programme, and raising awareness to support earlier clinical diagnosis
  • Advocating on behalf of patients to ensure their voices are heard in key processes, providing access to effective treatments and services
Continue reading

Also fundraising for this cause

Steve Proctor

1% complete

  • £33 Raised
  • £3,000 Target

Nicole Edmondson & Charles Innes-Smith

30% complete

  • £155 Raised
  • £500 Target

Geraldine Bhattacharya

100% complete

  • £2,815 Raised
  • £2,000 Target