Useful links

Genetic Interest Group

The Genetic Interest Group (GIG) is a national alliance of patient organisations with a membership of over 130 charities which support children, families and individuals affected by genetic disorders.

Erfocentrum

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

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

AidWeb.org

the relational database on rare disorders, a virtual community for families, health professionals and specialists. AidWeb.org 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

Eurordis

European Organisation for Rare Diseases

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.org

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

Last changed: 2008-09-22