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, EWGGD, Funding
My wife Dvora has Guacher. I am active in Gaucher community in the last 5 years. In addition to my position in EGA I am the chairman of the Israeli Gaucher Association.
Tanya Collin-Histed
(UK); EWGGD, Research, Funding, Patient Assotiation liason
Tanya Collin-Histed – Tanya is from the United Kingdom and has been involved in the European Gaucher Alliance since 2005. 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. Since 2005 Tanya has been working part time for the UK Gauchers Association as its Executive Director and manages the day to day activities of the Charity.
Anne Grethe Laurdisen
(Denmark); Patient Association liaison, European Union
My name is Anne-Grethe Lauridsen and I am a Gaucher patient (type1), born in 1958. I am married to Kurt and we have 3 wonderful children (born 1992, 1996, 1999) all adopted from Vietnam.
I was diagnosed in May 1974, by coincidence. I was at the hospital for another reason but the doctor saw the big shadows from my liver and spleen at the x-ray and I spend 4 weeks at the hospital while they were trying to find the diagnose – they actually did. I have a sister and a brother and my sister was also diagnosed with Gaucher.
The next 16 years I only had sporadic contact to hospitals, lived a “normal” life, didn’t feel sick but as the years passed some inconvenience occurred. From around 1990 I was followed regularly by a doctor and at that time I also began having problems with increased bleeding tendency.
In 1992 I started treatment as the second patient in Denmark.
Starting treatment also brought me together with other Gaucher patients, 3 little girls and their parents. This gave me the idea about networking and trying to find other Gaucher patients in Denmark, but it lasted until the beginning of 2000 before 5 Danish Gaucher patients and 1 Norwegian had a patients meeting for the first time. In November 2002 we founded Gaucher Association Denmark, I was elected as Chairman, and since then I have gradually been involved more work for the benefit of Gaucher patients.
Lars Magnusson (Sweden); Patient Association liaison, Research
Wojtek Oswiecinski
(Poland); Information; Patient Association liason
I am the Gaucher patient diagnosed in 1984 and treated since 1995. For the first time I have joined EWGGD in 2001 in Jerusalem. In Budapest 2008 I joined EGA. Now I am responisible for EGA web page development.
Gil Faran
(Israel); Funding, Research, Information
Gil and his wife Sigal, have three sons, two of them have Gaucher disease. The eldest, Ido, is 16.5 years old and started treatment when he was 4.5 years old. Omer, the youngest, is 7 years old 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.
Pascal Niemeyer(Germany); European Union, EWGGD, Information
Pascal Niemeyer is 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 .
His family has benefited from the support of the local Gaucher Association, especially in the hard period of diagnostic, he wants to make sure, that other families and patients will get the help and the information they need. His area of responsibility is the relationship to the EU, the connection to the EWGGD as well as the area of information.
Pascal “day” job is in a private Bank in Luxemburg.
I. Znidar(Slovenia); Research, Pharmaceutical Company Liaison
I. Žnidar was diagnosed with Gaucher disease in 1993, when she was 15 years old.
She co-founded Slovenian Gaucher Association in 2003 and was elected its Chairman in 2009. She became an EGA director in 2009.
Irena holds a PhD in Biology and is employed in a pharmaceutical company.
