Tanya Collin-Histed

International Gaucher Alliance (IGA), UK

Tanya Collin-Histed became involved in the Gaucher world in 1996 when her daughter Maddie was diagnosed with Type 3 Gaucher disease. A year later she became a Trustee for the UK Gauchers Association and started to support patients and their families with Type II and III Gaucher Disease through family conferences, information booklets and proving friendship and emotional support.

In 2001 Tanya received the Alan Gordon Memorial Award in recognition for her work with Neuronopathic Gaucher disease and her support to families.

In 2003 Tanya became the national development manager for the UK Niemann-Pick Disease Group, the charities first ever employee. However, in 2005 she took up the post of Executive Director of the Gauchers Association UK and was in this post, as Chief Executive until July 2018 when she resigned to take on the role of Chief Executive Officer for the International Gaucher Alliance (IGA) on a full-time basis. Tanya took up the position as a Trustee of the UK Gauchers Association in October 2018.

Tanya has been the CEO of the IGA since 2008 and underpins all the activities of the IGA from the UK.

In December 2017 Tanya became a Trustee of Medics4RareDiseases. Tanya resigned from M4RD in 2020 to be able to focus more on her work as a Trustee for the UK Gauchers Association.

In June 2020, Tanya became the CEO of International GARDIAN Ltd (IGL). The IGL is a company wholly owned by the IGA that will own and govern the new Global patient nGD registry. The Gaucher Registry for Development, Innovation, and Analysis of Neuronopathic disease (GARDIAN) will study patients with GD2 and GD3 worldwide by collecting longitudinal data on self-reported symptom burden, functional status, and health-related quality of life (HRQOL) and well-being in a systematic and standardized manner.

In October 2022, Tanya resigned as a Trustee for the UK Gauchers Association to focus on her international work.

Outside of work Tanya’s time is spent open water swimming, trail running, with friends and family or a good book.