Information hub for everyone affected by genetic, rare and undiagnosed conditions
Covid-19 is a particularly challenging time for people and families affected by genetic, rare and undiagnosed conditions. This hub has been set up to enable quick and easy access to relevant information and will be updated regularly while Covid-19 remains a threat to health.
You can find general information or information specific to your country. Where available, we have linked to organisations providing condition specific information. Check out the resources section for practical information and links to help with the challenges of self isolating and social distancing. If you have any information or resources you would like to share please get in touch via the contact page.
Genetic Alliance UK is hosting a weekly virtual meeting every Tuesday between 10-11am for any organisations supporting communities affected by genetic or rare conditions.
Our weekly virtual community check-ins are a safe space to raise concerns or issues, share information and work together as a community to meet the challenges of Covid-19. You do not need to be a member organisation of Genetic Alliance UK to attend, just get in touch via the contact page for joining instructions.
Important information by country
General News and updates
Concerns raised with the Rare Disease Policy Board
Short video summary of issues and patient concerns relating to Covid-19 recently raised with the Rare Disease Policy...
Information sheets from the British Society for Genetic Medicine (BSGM) and Association of Gentic Counsellors (AGNC)
The BSGM and AGNC have put together information to support patients and carers during the Covid-19 pandemic
About Genetic Alliance UK
We are the national charity working to improve the lives of patients and families affected by genetic, rare and undiagnosed conditions. We are an alliance of over 200 patient organisations.
We are home to Rare Disease UK– the national campaign for people with rare diseases and all who support them – and SWAN UK (syndromes without a name), the only dedicated support network available for families of children and young adults with undiagnosed genetic conditions in the UK.
Find out more about the work we do on our website.