Useful links


Genetic Alliance (previously known as Genetic Interest Group or GIG)

Genetic Alliance UK (GA) is a national alliance of patient organisations with a membership of over 130 charities which support children, families and individuals affected by genetic disorders.

International Genetic Alliance

Internalial Genetic Alliance (GA) is an alliance of continental and regional alliances of parent and patient organisations and of international disease specific groups all having an involvement in the opportunities and implications of genetics and biotechnology regarding its potential for prevention and treatment of serious diseases.


European Organisation for Rare Diseases


The portal for rare diseases and orphan drugs


The Erfocentrum is the Dutch national genetic resource and information centre. It provides information on genetics, pregnancy and perinatal care, medical biotechnology and relevant professionals through various websites, brochures and events. People are also able to contact the Erfocentrum directly for personal queries via e mail and telephone, through the Erfolijn helpdesk.


Uniamo is a national alliance of patients, based in Italy, which aims to improve the rights and quality of life of all persons affected by rare illnesses

the relational database on rare disorders, a virtual community for families, health professionals and specialists. is an interactive web portal where information on rare diseases can be both given and received.

Information Centre for Rare Diseases, Romania
Information Centre for Rare Diseases, Bulgaria
Information Centre for Rare Diseases, Poland
The Central and Eastern European Genetic Network

CEE GN is a coalition of patients, family support groups and individuals, working together with scientists and industry to support people with common and rare genetic and congenital conditions and their families in countries of Central and Eastern Europe.

National Institute of Health; Office of Rare Diseases; USA

Portal to rare disease information and research

RareShare is a unique social hub building communities for patients, families, and healthcare professionals affected by rare disorders.

EuroGen Guide

Information for European patients about genetic testing and research.

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