You can reach the friendly Genetic Alliance UK team over phone, email or post. On this page we’ve included answers to some of the questions that we’re frequently asked, to make things easier for you.

The quickest way to get a response is to fill out the form below with your enquiry and the team will get back to you as quickly as possible.

If you’re looking for more information about a particular condition, one of our member organisations might be able to help. You can find our member contact information in our A-Z members directory.

  • Telephone: 0300 124 0441
  • Email: [email protected]
  • Our postal address: Genetic Alliance UK, 3rd Floor 86-90, Paul Street London, EC2A 4NE

Please note that the majority of the team work remotely or hybrid. This means that responding to your postal enquiry may take some time.


Press Enquiries: [email protected]

Membership: [email protected]

Policy: [email protected]

Fundraising: [email protected]

SWAN UK enquiries: [email protected]

Frequently asked questions

Genetic Alliance UK members receive our fortnightly digital newsletter (if you are a member and you aren’t receiving our newsletter then please contact us).

If your organisation would like to become a member of Genetic Alliance UK’s network and receive our digital member newsletter then please visit our Membership pages. 

If you are not a patient group eligible for membership, or you do not wish to become a member, you can register to receive our regular newsletter by signing up at the bottom of any page on our website

Your GP is the first place to contact for enquiring about genetic testing in the NHS. Your GP will refer you to a regional genetics centre if they decide it is appropriate. You can search the national test directories for England, Scotland, Wales and Northern Ireland to see if there are tests available through the NHS for your condition, and also see the testing criteria. The British Society for Genetic Medicine have a list regional genetics centres and our website has more information about genetic testing.

People tell us that one of the hardest things about having a rare genetic condition is that often their doctor may not have much information about the condition. At Genetic Alliance UK we are not medically trained, so cannot offer you medical advice about your condition, or the management and treatment of it.

We can, however, point you in the direction of organisations that may have more information about your specific condition. Head to our A-Z list of member organisations to see if your condition is covered by a Genetic Alliance UK member organisation. If your condition isn’t covered by a member organisation, you may be able to find out more about it by looking at our A-Z of genetic and rare conditions.

If you are unable to find the information you need, please get in touch with us.

Accessing appropriate insurance is a significant problem for many people affected by genetic conditions. We regularly receive calls and emails from people affected by genetic conditions who are finding it difficult or impossible to access appropriate or affordable insurance cover. People are also uncertain about their rights and obligations in relation to disclosing details of genetic risks or family medical history. 

Information about travel insurance, life insurance and other insurance.

If you a have a query that you can’t find the answer to, then please fill out our form and we’ll get back to you as soon as we can.