International Genetic Alliance

Name: EGAN
Address: Koninginnelaan 23, Soest, 3762 DA
Telephone: + 31 35 6034040

"VOICING THE INTERESTS OF PEOPLE AFFECTED BY GENETIC DISEASES"

"REPRESENTING PATIENT AND PARENT ORGANIZATIONS
FROM AUSTRALIA, EASTERN EUROPE, WESTERN EUROPE, MIDDLE EAST, INDIA, NEW ZEALAND, SOUTH AFRICA, SOUTH AMERICA AND NORTH AMERICA"

IGA is a meeting place for patient organizations involved in chronic and debilitating diseases and with an interest in genetics and medical biotechnology.
IGA is an alliance of continental and regional alliances of parent and patient organizations with an involvement in the opportunities and implications of genetics and biotechnology regarding its potential for prevention and treatment of serious diseases.
IGA works for a world in which genetic diseases and acquired birth disorders are understood, prevented and cured and those affected supported.
IGA aims at voicing the interests of patient organizations on the global level.
IGA values collaboration with science, industry, financiers and policymakers in achieving its goals. You are welcome to join our efforts.

Mission and Objectives

Vision

IGA seeks a world where genetic conditions are understood, prevented, treated, ameliorated, and cured.

Mission

To promote medical genetic services, research, technologies, and access to information, in order to alleviate the burden of genetic conditions for individuals, families and communities.

Guiding Principles

Genetic conditions affect individuals, families, and communities.
All individuals, regardless of their genetic condition, culture, race, ethnicity, beliefs and/or socio-economic status, deserve equal rights and opportunities, without prejudice, discrimination or stigma.
Relevant social, ethical and legal protections are critical to the progress and translation of basic science to services.
Worldwide information sharing and resource exchange, with respect for diversity, increases capacity and decreases disparities.
Meaningful global progress in policy, health care and research requires a patient / parent network in partnership with health professionals, industry and policy makers.
Applications of education, medical genetic services, research, and biotechnology alleviate the burden of genetic conditions.

Aims and Objectives

Support and accelerate research to prevent, treat, ameliorate and cure genetic conditions, through the translation of biotechnologies to accessible services.
Develop policy in partnership with policy makers.
Engage in partnerships with clinicians, researchers, industry, and NGOs with a shared mission.
Establish best practice in medical genetic services that respect the autonomy of the individual, family, and community within a cultural context.
Ensure access to relevant information, services, technologies, and medical treatments.

Board

American Genetic Alliance (AGA)
Alastair Kent United Kingdom Genetic Interest Group (GIG) /
European Genetic Alliances’ Network (EGAN)
Ysbrand Poortman The Netherlands Dutch Genetic Alliance (VSOP)/EGAN
Dianne Petrie Australia Association of Genetic Support Groups of Australasia (AGSA)
Ihor Bariliak Ukraine Ukrainian Alliance for the Prevention of Birth Defects
HEART EU, Patient Network
John Forman New Zealand New Zealand Organisation for Genetic Disorders
Darius Farhud Iran Iranian Alliance of Parent/Patient Organisations
Jai Rup Singh India Indian Alliance of Parent/Patient Organisations
Arnold Christianson South Africa Southern African Inherited Disorders Association
Mayana Zatz Brazil South American Genetic Alliance of Patient Organisations

Executive Committee (continental representation)

North America
Secretary general Ysbrand Poortman Europe
Vice president Alastair Kent Europe
Vice president Dianne Petrie Australia
Vice president Jai Rup Singh Asia
Vice president Darius Farhud North Africa & Middle East
Vice president Mayana Zatz South America
Vice president Arnold Christianson Middle & South Africa

Steering Committee

Patrick Terry United States
Ysbrand Poortman The Netherlands
Alastair Kent United Kingdom
Dianne Petrie Australia

IGA Members

Europe - Ukraine- Africa - Middle East - Asia - Australia & New Zealand - North America - South America

Liaison and Partners

IGA collaborates with various global organizations. It is IGA's strong conviction that only through adequate collaboration the goals of the Alliance can be achieved. IGA welcomes proposals for collaboration from other organizations on the international and continental with similar or adjacent objectives and activities.

WAO: World Alliance of Organisations for Prevention and Treatment of Genetic and Congenital Conditions (www.world-alliance.org)
BioVision: Global Life Sciences Forum (www.biovision.org)
IFHGS: International Federation of Human Genetic Societies (www.ifhgs.org)

Central Secretariat

c/o VSOP
Koninginnelaan 23
3762 DA Soest
The Netherlands
T: + 31 35 6034040
F: + 31 35 6027440
e-mail: ypootman@zonnet.nl

Continental secretariats

Washington
4301 Connecticut Avenue NW - Suite 404
Washington DC 20008-2369 (USA)
sterry@geneticalliance.org
T: +1-202- 966 5557
F: +1-202- 966 8553 San Paulo
Rua do Matao, Traversa 13, No 106
Cidade Universitaria
Sao Paolo + 55 08 900 (Brazil)
mayazatz@usp.br
Sydney/Surry Hills
66 Albion Street
NSW 2010 (Australia)
Agsa@ozemail.com.au
T: +61-2-9211 1462
F: +61-2-9211 8077 Teheran
Dept. of Human Genetics, School of Public Health
PO Box 14155-6446
Teheran (Iran)
farhud@sina.tums.ac.ir
T: +98-21 8908447/9784
F: +98-21 8803003
Johannesburg
Hospitaalstraat
PO Box 1038
2000 Johannesburg (South Africa)
arnoldc@mail.saimr.wits.ac.za
T: +27-11489 9212/00-27-7282965
F: +27-11489 9286 London
Unit 4D
Leroy House
436 Essex Road
London N1 3 QP (United Kingdom)
Alastair@gig.org.uk
T: +44-20-77043141
F: +44-20-73591447