Our Story

Jen-Greene

How it all began

Climb was inspired by Jennifer Rachel Greene, born on December 8th 1978.
Jen’s parents, on receiving a devastating diagnosis of a rare metabolic disorder called Cystinosis, vowed to group all metabolic disorders under one umbrella charity which was originally known as RTMDC. Its aims would be to fight for an improvement in research, parental support for all affected families, education of professionals and non-specialists and to raise awareness of these little known and poorly understood disorders and their impact on patients and families.

With help from family, friends and the medical profession, RTMDC/Climb was registered as a national charity in Nantwich, Cheshire in November 1981.

Over the following two decades the charity developed many branches and supporters, and through the tireless efforts of its fundraisers, medical advisory board and Governing Council, supported research into many metabolic disorders.

Climb’s work and reputation in delivering these objectives and providing affected families with high quality information and advice spread from the UK to Europe and beyond. It grew to be part of a worldwide collaborative network of groups with similar aims. Climb 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 was awarded the OBE for services to the charity and in 1995 Climb 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 was elected as a founder director of EURORDIS and acted as its president from 2001-2003. A few years later, Jen’s Mum 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 passed away in 2007.

CLIMB remains her legacy today…