The EGA Board (f.l.t.r.: Anne-Grethe Lauridsen, Manjit Singh, Biljana Jovanović, Irena Žnidar, Vesna Aleksovska, Pascal Niemeyer, Tanya Collin-Histed. Front: Paulina Peña Aragón, Aimeé-Kate Bosch, Christine White
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.).
Paulina Peña Aragón was diagnosed with Gaucher disease when she was 4 years old but didn't start treatment until she was 11 and so she got some irreversible symptoms. Since she was a little girl she has shared her life testimony in different stages, and has been related with non-profit organisations since then. She studied psychology and specialised in positive psychology and health psychology. Her thesis work is an information, orientation and psychological support program for rare disease patients and their families called “AcceSalud”. She is the director of this program in FEMEXER (Mexican Federation of Rare Diseases) and the main psychologist for Proyecto Pide un Deseo México, the lysosomal storage disease organization in Mexico. She is also an improviser and a dog lover.
Aimee-Kate grew up in a small town in South Africa and was was diagnosed at the age of 5 with Gauchers Disease. After completing her Matric, she went on to study Speech Therapy at the University of Stellenbosch and in 2017 she completed her Community Service as a Speech Therapist at Khayelitsha District hospital in Cape Town. Aimee-Kate runs her own Speech Therapy practice, servicing adult patients with acquired neurogenic communication disorders and also works part time for the Western Cape Cerebral Palsy association as a Speech Therapist at Red Cross War Memorial Children’s hospital.
During her student years, Aimee got to know Rare Diseases South Africa where she became a youth ambassador for Gaucher Disease and has had the opportunity to participate in two Go with Gaucher meetings. Aimee then became the South African representative for the IGA. As a newly elected International Gaucher Alliance board member Aimee-Kate hopes to combine her passion for rare diseases and patient centred health care to make a positive contribution to the Gaucher and rare disease community.
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 IGA 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 International 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 IGA, 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 IGA 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.
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.
Christine is the President and Executive director of the National Gaucher Foundation of Canada. Christine became involved with Gaucher Disease when two of her children were diagnosed with type 1 Gaucher Disease. Christine was one of the founding members of the organization when it was created in 1991. Over the years Christine has served the foundation in various voluntary roles and has been working full-time for the foundation for the past 5 years. Christine is delighted and looking forward to serving the International Gaucher community via the IGA.
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 IGA director in 2009.
Tanya Collin-Histed, Sandra Zariņa, Jo Higgs
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 International Gaucher Alliance since 2005.
Jo joined the IGA in January 2012 and is based in the UK, supporting the work of the CEO and the Directors in achieving the IGA’s work programme goals on a day to day basis and is the first point of contact in the office for the IGA member associations. Jo has enjoyed building relationships within the Gaucher community by attending many meetings during her time with the IGA including board meetings, biennial meetings and Go With Gaucher. She was also involved in the early development of International Gaucher Day.
Jo has four children and feels honoured to be part of the global Gaucher community.
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 the Latvian Rare Disease Society ‘Caladrius’ to defend the rights and interests of patients with rare diseases.
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.
In April 2018 Sandra resigned from the IGA Board to take on a new position working as a consultant for the IGA, focusing on a number of key EGA projects. At the same time, she remains involved in the activities of the IGA as a volunteer working in areas such as planning the biennial members meeting and implementing the EGA’s code of ethics.
Suyog Sathe, Marketa Smockova, Shashank Tyagi
As part of the IGA’s transition to become a global organisation we have been exploring how best to increase our footprint across the globe. We have decided to pilot for 12 months three Regional Mangers posts: these posts will be the eyes and ears of the IGA and work with the IGA Board and Team to be proactive and interact with the key stakeholders in the Gaucher community; to explore and seek to identify persons to support new development opportunities and give a bi-monthly report to the IGA about planned activities, challenges and advancements for Gaucher patients in the region. The regional Managers role is a voluntary position and the first two regions will be the South Asia and Eastern Europe & the Balkans.
Shashank is 28 years of age and is a young energetic man living with Gaucher Disease Type1 in India. He was diagnosed at the age of 14, and has not let anything prevent him from achieving his goals. In 2015 Shashank completed an MBA degree and now works in the field of real estate managing the family business.
Since 2012; Shashank has been undertaking voluntary work for the LSD Support Society – India and has undertaken projects such as the patient registry system, innovative funding and organising patient meetings throughout India. Shashank has participated in the Go with Gaucher programme and in 2017 attended to assist the organising team and present to the group. With his experience gained in the Gaucher community the transition to the role of regional manager was a natural progression.
Shashank states that “He feels honoured to be part of the IGA and is fully committed towards a better future for the Gaucher Community”
Shashank's area of responsibility include Bhutan, Pakistan,Nepal and Afghanistan.
Suyog is 26 years of age and lives in India. Suyog was diagnosed with Gaucher Disease at the age of 5 and became the first patient in India to receive ERT in 1999. In the following years Suyog has been involved in the work of patient advocacy and Gaucher initiatives in India. Suyog shares his powerful story of being a Gaucher patient and speaks at various national and international conferences. Suyog is a member of the LSDSS India and has participated in the Go with Gaucher programme, attending for the second time in 2017 to present to the group. With his experience gained in the Gaucher Community the transition to the role of regional manager was a natural progression.
Suyog is pursuing a career in engineering however he has aspirations to become a commercial pilot. In his spare time he enjoys travelling, photography and music.
Suyog's area of responsibility include Sri Lanka, Maldives and Bangladesh.
Markéta is a Type 1 Gaucher patient. She was diagnosed when she was 4 years old and at that time there was no treatment available in the Czech Republic. She started treatment in 1992 as the fourth patient in Czech Republic.
Markéta’s mother became a member of the Czech Gaucher association (META) and when Markéta grew up she started to work with the national association, later becoming the EGA representative and helping other patients. She has attended various national and international meetings and participated in the Go with Gaucher programme, attending for the third time in 2017 to make a presentation and to help plan the meeting. With her experience gained in the Gaucher Community the transition to the role of regional manager was a natural progression.
Markéta is a manager in a financial company.
Markéta's area of responsibility include Eastern Europe and the Balkans.