​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. 

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.  ​

MedlinePlus
​Genetics

A large guide to genetic conditions hosted by the US National Library of Medicine. It was previously named Genetics Home Reference. See the section: "Genetic Conditions"

EuroGentest

A series of leaflets providing general information for patients and families about genetics and genetic testing.

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. ​ 

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. Currently being updated.

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
Scottish Genomes Partnership (SGP)
Office for Rare Conditions Glasgow

England
GenomicsEngland: Understanding Genomics

​Ireland
www.cancergenetics.ie
​
Nederland
www.erfelijkheid.nl 

USA
National Organization for Rare Disorders
Brightpink.org (breast & ovarian cancer)
GARD (Genetics And Rare Diseases information centre)
American Society of Gene & Cell Therapy: How gene therapy works for specific conditions
​
Vietnam
Vietnamese Organization for Rare Diseases

MASSIVE OPEN ONLINE COURSES (MOOCs)

Understanding Genetic Disorders: How DNA Influences Health
Genomic Medicine: Harnessing the Power of the Human Genome 
Cancer in the 21st Century: the Genomic Revolution
Genomic Technologies in Clinical Diagnostics: Next Generation Sequencing
The Genomics Era: the Future of Genetics in Medicine
Genomic Medicine: Transforming Patient Care in Diabetes