Directors

Jeremy Manuel OBE (UK)

(chairman)
European Union, EWGGD, Pharmaceutical Company liaison

Jeremy Manuel co-founded the UK Gauchers Association in 1991 and remains its national chairman. He was also a founding member of the European Gaucher Alliance and was elected its chairman in 2008. He is a Trustee of the Helen Manuel Foundation: a Charitable Trust established to support research into Gauchers disease.

Through his work with the Association, Jeremy has represented the interests of Gauchers 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 Specialist Commissioning Advisory Group's Expert Committee 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 the Gauchers disease and is a Fellow of the Royal Society of Arts.

Yossi Cohen (Israel)

 Pharmaceutical Company liaison, Funding

Yossi's wife Dvora has Gaucher disease.

He has been an active member of the Gaucher community for over 5 years and an EGA board member since 2008.  Yossi is also the chairman of the Israeli Gaucher Association. 

Tanya Collin-Histed (UK)

(Treasury/Administrator)
Funding, Patient Assotiation liaison, Humanitarian AID

Tanya's daughter Maddie was diagnosed with Type III Gaucher disease in 1996 at the age of 17 months. In 1997 Tanya joined the UK Gauchers Association to support families with children who have neuronopathic Gaucher disease. Tanya's main focus has been setting up conferences and educational booklets for the neurological families.

Tanya has been involved in the European Gaucher Alliance since 2005 and has been working part-time for the UK Gauchers Association as its chief executive, managing the day to day activities of the Charity.

Anne-Grethe Lauridsen (Denmark)

Patient Association liaison, information

Anne-Grethe is a Type I Gaucher patient, born in 1958.  She was diagnosed in 1974, by coincidence, whilst in hospital for another reason.  In 1992 she started treatment as the second patient in Denmark.  Anne-Grethe has two siblings and her sister also has Gaucher.  She is married to Kurt and has 3 children, all adopted from Vietnam.

During her first years of treatment, Anne-Grethe met with other Gaucher patients: 3 young girls and their parents.  This gave her the idea to 'network', but it wasn't until 2000 that the 6 Danish patients had their first face-to-face meeting.  The Denmark Gaucher Association was founded in November 2002, with Anne-Grethe as chairman.  Since then she has gradually become more involved in the Gaucher community and is now an active member of Rare Disorders Denmark and the co-ordinator for Nordic-Baltic Gaucher Association common work.

Anne-Grethe has been a director of EGA since 2008.

Radoslava Tomova (Bulgaria)

 Patient Association liaison, Research

Radoslava was diagnosed at the age of 4 with Type 1 Gaucher and started treatment when she was 14 years old.

She became a member of the Bulgarian Gaucher Association in 2008 and joined the EGA Board in 2010.

Ghislaine Surrel (France)

Research

Ghislaine co-founded the Association on the lysosomal storage diseases (VML France) in 1990. She was a member of their board until 2003 and is now responsible for relations with the international group of patients with Gaucher disease.
She was also a founding member of the European Gaucher Alliance (EGA) in 1994.
In 1978, her 3 month-year old son was diagnosed with Gaucher disease type I. He has been treated since 1992.
Since his diagnosis, Ghislaine became involved in seeking information about the disease, treatments and contact with other families.
She became a member of the EGA Board in 2010.

Gil Faran (Israel)

Funding, Research, information

Gil born in 1965 in Israel. Gil and his wife Sigal, have three sons, two of them have Gaucher disease. The eldest, Ido, born in 1993 and started treatment when he was 4.5 years old. Omer, the youngest, born in 2002  and started treatment in 2009. Both boys receive their treatment at home. Gil is active member in the Israel Gaucher association and joined the EGA as a Board member in 2008. Gil is working in the funding, research, and information groups in the EGA.

Pascal Niemeyer (Germany)

European Union, EWGGD, Information

Pascal Niemeyer has been deputy chairman of the German Gaucher Association since 2006 and director of the EGA since June 2008. Pascal become involved in the Gaucher community when his daughter Felise was diagnosed with Type III Gaucher disease in 2002, Felise died in 2007 aged 5 years old.

His family has benefited from the support of the local Gaucher Association, especially during the difficult period of diagnosis.  Pascal wants to esure that other families and patients get the help and information that they need.

Irena Znidar (Slovenia)

Research, Pharmaceutical Company Liaison

Irena co-founded the Slovenian Gaucher Association in 2003 and was elected its chairman in 2009.  She holds a PhD in Biology and is employed by a pharmaceutical company.

Irena became an EGA director in 2009.