Dan was diagnosed with Type 1 Gaucher Disease in 2003. He joined the Gauchers Association to meet other people affected by the disease and to learn more about the various issues facing Gaucher patients in a different position to him. Dan continues to feel a deep sense of gratitude for the efforts that have been put in by the medical community and the Gauchers Association to get Gaucher patients to where they are today – being able to live a full life with the benefit of treatment. Dan was appointed Chairman of the Association in 2012.
Jeremy co-founded the UK Gauchers Association in 1991 and was the Chairman until 2012. He was a founding member and Chairman of the International Gaucher Alliance (IGA) which is an umbrella organisation of worldwide patient groups. He is a Trustee of the Helen Manuel Foundation, which was established to raise funds for research into Gaucher Disease. Through his work with the Association, Jeremy has represented the interests of Gaucher patients both in the UK and abroad to clinicians, scientists, government and industry. Jeremy is a patient representative to the UK Department of Health National Commissioning Group on Lysosomal Storage Disorders. Jeremy is a practising lawyer and an accredited commercial mediator. He was awarded the Freedom of the City of London in 1994 and an OBE in the Queens New Year Honours List 1999 for services to Gauchers Disease.
Emily was diagnosed with Type 1 Gaucher Disease when she was a teenager. The Gauchers Association was a lifeline of support following diagnosis, and Emily wanted to give something back to the Gaucher community in return, by becoming involved with the Association. Emily is a lawyer and lives in London with her husband and kids.
Su joined the Gauchers Association in January 2023 and looks after the office day to day. Su is there to answer any of your questions and to signpost you in the right direction. With no prior knowledge of Gaucher Disease, Su has found it very interesting to learn all about it and to hear many of your stories. Su is here to help you whenever you made need so please do contact her at the office on 020 3011 1789 or drop her an email to su@gaucher.org.uk