​This page provides links to sources of information that are primarily designed for patients and their relatives although many will also be useful to senior school pupils and some professionals. The information includes comprehensive A-Z directories of summarised information for numerous genetic conditions (including local contact details) as well as educational leaflets that can be downloaded and printed. 

EuroGentest

A series of 15 leaflets providing general information for patients and families about genetics and genetic testing, in multiple languages. Based in Leuven, Belgium. Provided in MULTIPLE LANGUAGES. 

Contact

A UK charity supporting families, providing an A-Z directory of many genetic conditions and full contact details of support groups.

Orphanet

A consortium of 40 countries, providing summarised info on rare diseases & patient organisations (with contact details in many countries, especially in Europe). Provided in MULTIPLE LANGUAGES. ​ 

Antenatal Results & Choices

This organisation offers non-directive information & support to parents, before, during & after antenatal screening. 

Unique
​support group

​A support group especially for chromosome disorders but also for single gene disorders.  Numerous family-friendly, medically-verified, disorder-specific information guides, in several languages.  ​

Genetics Home
​Reference

A large guide to genetic conditions hosted by the US National Library of Medicine. See the section: "Health Conditions A-Z"

Inherited cancers

Information on genetic conditions and inherited cancers, provided by Macmillan. It includes information relating to the causes, the risk factors and the possible consequences of test results.

Genetic Alliance

This UK charity provides information for patients, families and other individuals who may be interested in genetic conditions.

Clinical genetics leaflets

Source of many leaflets on clinical genetic conditions and genetic testing, from ScotGEN and the South-East Scotland Genetic Service. 

Understanding genetic disorders

Animations explaining different types of inheritance patterns e.g. autosomal dominant, autosomal recessive, consanguinity (cousin marriages), X-linked recessive and chromosomal rearrangements. Produced by National Centre for Medical Genetics and compiled by Univ. College Dublin.  The explanations are provided in MULTIPLE LANGUAGES.  

EGAN -
​patient network

The "Patients Network for Medical Research and Health", EGAN is an alliance of European disease-specific patient organisations and National Genetic Alliances. Working for a voice in research & health policy, it seeks to improve understanding, effective treatment, & prevention of genetic conditions & also support for the people affected. 

EURORDIS
Rare Diseases Europe

This is a non-governmental patient-driven alliance of patient organisations representing 862 rare disease patient organisations in 70 countries.​ ​They aim to build a strong pan-European community of patient organisations and people living with rare diseases. Provided in MULTIPLE LANGUAGES. ​

Localized/national initiatives

Please note that the EuroGentest, Orphanet, Understanding genetic disorders and EURORDIS websites (above) are provided in multiple languages. 

Other resources:
​
Scotland

www.scotgen.org.uk 

Scottish Genomes Partnership (SGP)


​Nederland

www.erfelijkheid.nl