Connect to others with rare conditions

Some conditions affect just a handful of people around the world. If you or your relative have a rare condition, you may want to get in touch other families who have the same condition or mutations in the same gene.

This page gives you a list of websites and services you can use to get in touch with others.  These portals allow you to connect with other patients with rare conditions, even if your condition doesn’t have a name. There is also a list of UK based charities and support organisations.

Connect to others

These sites have no connections to Genomics England. The descriptions of their services are taken from the websites themselves.

RareConnect https://www.rareconnect.org/en

A safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. RareConnect partners with many of the world’s leading rare disease patient groups to offer global online communities allowing people to connect around issues which affect them while living with a rare disease.

MyGene2 https://www.mygene2.org/MyGene2/

Families with rare genetic conditions may use MyGene2 to search for and contact other families who have the same condition or mutations in the same gene in order to share information and offer support. Families have the option to make the information they submit to MyGene2 available to anyone visiting the site (i.e. public) or available to only registered users who have also contributed data to MyGene2. Families also have the choice of whether or not they want to be contacted by clinicians and researchers or other families.

Support for families affected by rare disease

Listed here are several charities and support organisations. Each can provide information, support or services for families affected by rare diseases. They can help you share your story, connect with others, or get involved in research and awareness activities.

Contact A Family is a national charity for families with disabled children.

EURODIS, Rare Diseases Europe, is a patient-driven alliance of patient organisations representing 695 rare disease patient organisations in 63 countries.

Genetic Alliance UK is the national charity working to improve the lives of patients and families affected by all types of genetic conditions.

Rare disease UK is the national alliance for people with rare diseases and all who support them.

SWAN, Syndromes Without A Name UK offers support and information to parents of children with undiagnosed genetic conditions.

Unique, Understanding chromosome disorders aim to inform, support and alleviate the isolation of anyone affected by a rare chromosome disorder and to raise public awareness.

For support with a specific rare disease, you can search for patient organisations and charities on the Rare disease UK website.

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