Our history

In May 1991, eight English sufferers (and their parents) met in a north London community hall. The meeting was organised by Jeremy Manuel, who with his family, had founded the Helen Manuel Foundation in memory of their mother who had suffered from Gaucher Disease. Of the patients who attended, none knew each other (except for two sisters) although they lived within a radius of a few miles. Professor Victor Hoffbrand, a consultant haematologist at the Royal Free Hospital in London, described the symptoms of Gaucher Disease, which several of the patients recognised but had not realised were part of their condition. He spoke about the new enzyme replacement therapy that was due to be licensed in the US and Professor Mia Horowitz, then from the Weitzmann Institute of Science spoke about the genetic basis of the disease and the mutations that had been discovered.

After the meeting the sufferers and parents exchanged stories. One mother, who had been told that her daughter would not live to the age of 20, met a married woman with Gaucher Disease who had children and a career. A recently diagnosed man in his 50s met two sisters, both of whom had been diagnosed 30 years earlier in their teens. The sense of relief of those who were able to exchange their life stories was obvious and it was agreed that more information and emotional support was needed. This meeting led to the foundation of the UK Gauchers Association.

Gradually the number of people with Gaucher Disease contacting the UK patient group increased. Eight people with Gauchers Disease had attended the inaugural meeting in 1991, and by 2005 the Gauchers Association was in contact with nearly 270 sufferers in the UK. During the same period, the numbers of identified patients increased significantly in other countries across Europe, North and South America.

In 1997, the UK Gauchers Association recruited Tanya Collin-Histed, whose daughter had been diagnosed with Type 3 Gaucher disease at 16 months old, to join their Executive Committee to focus on raising awareness of the neurological form of the disease and to support families affected. Previously, the group’s attention had mainly focused on Type 1 Gaucher Disease, so this enabled the group to offer to Type 3, and in some cases Type 2 families, someone who understood the issues they faced.

The Gauchers Association has published a newsletter since the 1990s. This is currently distributed to over 1,300 families, doctors, scientists and others across the UK and worldwide. It includes the latest information on every aspect of the disease and regularly includes a personal story from a patient’s or a parent’s experience of living with the disorder. Often emotional to read, these stories help others to understand their own condition. Its content is verified by a variety of specialists.

The Gauchers Association was a founding member of the International Gaucher Alliance (IGA) – formerly known as the European Gaucher Alliance (EGA) – which now has over 50 Member Associations. Learn more about the IGA.