The EGA Board (f.l.t.r.: Pascal Niemeyer; Anne-Grethe Lauridsen; Vesna Aleksovska; Johanna Parkkinen; Sandra Zarina; Jasenka Wagner; Biljana Jovanovic; Tanya Collin-Histed; Jeremy Manuel & Irena Znidar. Not pictured: Jo Higgs)
Vesna founded the Association of citizens for rare diseases “Life With Challenges”– Bitola in 2009. She is a Gaucher patient and patient advocate for rare disease patients in R. Macedonia. She also co-founded the National Alliance for Rare Diseases of R. Macedonia in 2014. In 2013 she became a member of the DITA (Drug Information, Transparency and Access) Task Force EURORDIS.
Vesna works in the field of advocacy and lobbying for rights of the rare disease patients in R. Macedonia through cooperation and communication with organisations and institutions (government and non-government) on national and international level. She believes that through strengthening patients and raising public awareness about rare diseases the world can become a better place to live in for patients and families that face life filled with challenges.
Vesna works as a freelance trainer and consultant in the development of Human Resources (motivation, communication, organisation, coordination, project cycle management, etc.).
Biljana is a Type 1 Gaucher patient, diagnosed in 2008. She has been a member of the Serbian Gaucher Association since then and was elected as a their chairperson in 2014.
The most important thing for her is to help patients to get information and to get access to therapy. She also works in raising awareness campaigns about issues of Gaucher patients in Serbia and pays special attention to newly diagnosed patients and psychological support in this critical moment.
Biljana has been working as a social worker with children for 16 years and has dedicated her life to helping people in need. She is married and her husband is a great support to her.
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.
The idea of creating network between patients and families was the main reason for her to take the initiative to found The Gaucher Association Denmark in 2002. Anne-Grethe has been the chairman since the association was founded. She is an active member of Rare Diseases Denmark and the co-ordinator for Nordic-Baltic Gaucher Associations common work.
Anne-Grethe has been involved in the work of the EGA since 2002 and became a director in 2008. The importance of creating networks and peer-support between patients and families across borders is a key area to her.
Jeremy Manuel co-founded the UK Gauchers Association in 1991, was its national chairman until 2012 and remains a board director. He was also a founding member of the European Gaucher Alliance and was elected its Chairman in 2008-2016. He is a Trustee of the Helen Manuel Foundation: a Charitable Trust established to support research into Gaucher disease.
Through his work with the Association and the EGA, Jeremy has represented the interests of Gaucher patients both in the UK and abroad to clinicians, scientists, and industry as well as the UK Government and Parliament, the European Parliament and European Commission and the European Medicines agency. Jeremy is a Board member of the European Working Group on Gaucher Disease (EWGGD) and is a Lay Representative to the Highly Specialised Technologies Evaluation Committee of the UK’s National Institute for Health and Care Excellence (NICE).
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 Gaucher disease and is a Fellow of the Royal Society of Arts.
Pascal Niemeyer has been on the board of the German Gaucher Association since 2006 and has been elected chairman of it since 2012. He has been a director of the EGA since June 2008 and was elected its chairman in 2016. Pascal became involved in the Gaucher community when his daughter was diagnosed with Type III Gaucher disease in 2002, she 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 ensure that other families and patients get the help and information that they need.
Jasenka is a Type I Gaucher patient. She was diagnosed in 2009 and started to receive therapy in 2010. Her brother has Type I Gaucher disease, too. Soon after her diagnosis she joined the Croatian alliance for rare diseases and invited other Gaucher patients to become members too.
Jasenka started to organise local Gaucher patients' meetings and initiated the joining of Croatian patients to the EGA in 2013. She became an EGA Director in 2016.
Jasenka is a biochemist, with a PhD in molecular medicine and is a specialist in laboratory medicine. She works as an assistant professor at the Faculty of Medicine in Osijek, Croatia.
Among other subjects, she teaches medical students about rare diseases, inborn errors of metabolism and human genetics. She is dedicated to raising awareness about rare diseases and to improving the quality of life of Gaucher patients.
Sandra's son Gustavs was diagnosed with Type I Gaucher disease in 2007 at the age of 3 years and he started his treatment in 2008. In 2009, Sandra co-founded Latvian Rare Disease Society 'Caladrius' to defend the rights and interests of patients with rare diseases. Gustavs's parents initiated court proceedings against the state for the latter to cover costs of their son's treatment. Due to these activities and further actions of the Latvian Rare Disease Society Caladrius, a special budget programme for children with rare diseases was established.
Since 2009 Sandra became actively involved in the Gaucher community by representing Latvia in Nordic- Baltic Gaucher Association meetings and EGA annual meetings. Sandra joined the EGA Board in 2012.
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.
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.
Manjit Singh (India)
Manjit was one of a group of 10 parents in India who formed a Patient Advocacy Group LSDSS in 2010 and has worked tirelessly for that cause since. Manjit was elected the Honorary President of the group in 2013 and under his stewardship; Awareness of rare diseases and in particular Gaucher Disease has increased significantly across India. Gaucher Disease is the most common LSD in India with about 150 diagnosed patients, with a further 250-300 potential patients remaining undiagnosed due to a lack of testing facilities. Manjit is passionate about not only raising awareness across the Indian sub-continent, but also in securing the legal rights of patients to receive treatment from Government sources. In that respect Manjit and the LSDSS have secured a number of legal milestones in recent years. Manjit is a dedicated family man and he also has a successful management career within State Corporations where his achievements were recently recognised with a philanthropic award.
Kate White (Canada)
In Kates own words “I was diagnosed with Gaucher Disease in 1993 at the young age of three. At the time the current treatment options were not available and being so young I was unable to advocate myself. Luckily for me, my mother and a group of strong minded Gaucher patents and families stepped in and pushed for government funding and a better future for Gaucher patients. Twenty years later I decided to join the board of the NGF to help others do what was once done for me”
Jo joined the EGA in January 2012 and is based in the UK, supporting the work of the CEO and Directors in achieving the EGA’s work programme goals.
Jo has three children and feels lucky to be part of the global Gaucher community. Jo is currently on maternity leave until February 2018.