IGA Members - Europe
Belgian National Alliance for Rare Disorders and National Alliance Committee
 Contact person: Alastair Kent (CEO)
Contact Coordinates:
Unit 4D, Leroy House, 436 Essex Road
London N1 3 QP (United Kingdom)
T: 00-44-20-77043141
F: 00-44-20-73591447
Website: www.gig.org.uk
Mission and goal:
Dutch Genetic Alliance of Parent/Patient Organisations (VSOP)
 Contact person: Dr. Cor Oosterwijk (Director)
Contact Coordinates:
Vredehofstraat 31
3761 HA Soestdijk (The Netherlands)
T: 00-31-35-6034040
F: 00-31-35-6027440
Website: www.vsop.nl
Mission and goal:
Fighting Blindness
 Contact person: Michael Griffith (Chief Executive)
Contact coordinates:
1 Christchurch Hall High Street
Dublin 8 (Ireland)
T: 00-351-1-709 3050
F: 00-351-1-709 3010
Website: www.fightingblindness.ie
Mission and goal:
Genetic Interest Group (GIG)
 Contact person: Alastair Kent (CEO)
Contact coordinates:
Unit 4D
Leroy House
436 Essex Road
London N1 3 QP (United Kingdom)
T: 00-44-20-77043141
F: 00-44-20-73591447
Website: www.geneticalliance.org.uk
Mission and goal:
We aim to improve the lives of people affected by genetic conditions by ensuring that high quality services and information are available to all who need them.
Our Objectives
Genetic Alliance UK seeks to promote awareness and understanding of genetic conditions through a wide range of activities including: -
1. Campaigning on issues of policy and practice
2. Providing support and information to patients and families
3. Educating policy makers, health professionals, patients and families and the general public
4. Supporting the development of high quality services and information and ensuring they are available to all
5. Providing a common platform to unite the voices of patients and families affected by genetic conditions
HEART EU Patient Network
 Contact person: Mr Adrian van Bellen (President)
Contact coordinates:
c/o Stichting Bloedlink
Boslaan 39
2132 RJ Hoofddorp
or
T: 00-31-23 5845087/5679933
F: 00-31-23 5849623/5639946
Website: www.bloedlink.nl
Mission and goal:
ASRIM
 Contact person: Sebastian Kessler
Contact coordinates:
Hospice de Cantoneaux
Rue du Bugnon 21
1005 Lausanne (Switzerland)
T : 00-41-21-3146990
F : 00-41-21-3143986
Website: www.asrim.ch
Mission and goal:
Ukrainian Alliance for the Prevention of Birth Defects
Contact person: Dr I. Baryliak (President)
Contact coordinates:
Kyiv Mohyla Academy
Skovoroda Street 2, Building 3, Room 209
Kyiv 04070 (Ukraine)
T: 00-9-38-044-230-2765
F: 00-9-38- 044-230-2765
Website:
www.ibis-birthdefects.org/start/index.htm
Mission and goal:
- To disseminate current medical information to healthcare professionals, parents, patients, and decision makers
- To have and impact on healthcare education and training
- To support prevention interventions
- To support and nurture development of parent / patient support groups
- Research
- Advocacy
- To develop partnerships with individuals and organizations interested in healthy child development
Bloedlink
Contact person: Michael Livingston
Contact coordinates:
Website:
Mission and goal:
EGAN European Genetic Alliances´ Network
 Contact person: Cor Oosterwijk (Secretary General)
Contact coordinates:
Vredehofstraat 31
3761 HA Soest (The Netherlands)
Kyiv 04070 (Ukraine)
T: 00-31-35-6034031
F: 00-31-35-6027440
Website: www.egan.eu
Mission and Objectives:
Mission: “EGAN is working for a voice in research and health policy and seeks a world in which genetic diseases are understood, effectively treated, prevented and the people affected supported”
Objectives:
EGAN - European Genetic Alliances´ Network - is a dynamic collaboration of patient organisations that work together because they recognize the value of their involvement in genetics, genomics and medical biotechnology for the prevention and treatment of genetic, multifactorial and congenital disorders. In addition, EGAN pays particular attention to the ethical, legal, psycho-social and cultural implications and the impact on society at large injecting a patient focussed perspective in to political and societal debate on these issues.
EGAN´s mission is to seek a world in which genetic diseases are understood, effectively treated and/or prevented and the people affected supported through a programme of high quality services delivered in a timely, accessible and equitable manner.
EGAN members are committed to sharing their opinions and their common interests. They believe that the empowerment of individuals, families and patient organisations enable them to make timely and informed decisions about family planning and life style issues.
EGAN is working from the patient perspective on biomedical research and therapy development.
EGAN actively contributes to the progress of human genetics, genomics and medical biotechnology as tools for early detection and accurate diagnosis, treatment and prevention of disease. EGAN is working together with other European patient alliances and organizations to build a unified approach to genetic and biotechnological issues from the patient perspective.
EGAN has been registered as a not-for-profit organisation under Belgian law since April 2005. EGAN started out as the European Alliance of Genetic Support groups (EAGS) in 1992 in Copenhagen, Denmark.
EGAN´s statements, position papers and newsletters can be found on the website www.egan.eu (currently under construction)
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