Please check our frequently asked questions before contacting us
- Where can I find out more about my condition?
- Is there a support group for my condition?
- How do I get tested for a genetic condition?
- What should I do if my GP refuses to refer me for a genetic test?
- Is my condition genetic?
- How do I get life or travel insurance if I have a rare or genetic condition?
- Can I volunteer for trials?
- How do I start a support group?
- How do I become a member of Genetic Alliance UK?
- How do I sign up to recieve news from Genetic Alliance UK?
Genetic Alliance UK
4D Leroy House
436 Essex Road
London N1 3QP
Get directions from Google Maps.
Get directions within London from Citymapper.
Phone: 020 7704 3141
For statements in response to government announcements, case studies and people available for interview on issues related to genetic disorders, please contact Beth on 020 7704 3141 ext. 111.
Patient organisations are often a good source of information about conditions, services, clinical trials and new treatments. Start by browsing our members to see if there are any that cover your condition. Then broaden your search to include organisations that are not our members by following these instructions.
The NHS Choices website often has information about genetic and rare conditions and is often a good starting point.
You can often find information by using a search engine such as Google to search for the name of your condtion.
Disease InfoSearch, run by Genetic Alliance in the USA, compiles scientific reviews alongside useful links and support groups (often US-based).
Lots of conditions have support groups. You can try the following options to find one for your condition:
- Browse our list of member organisations to see if there is a group for your condition.
- Use a search engine such as Google to search for the name of the condtion. Add 'support' or 'UK' to find support groups.
- Check Orpha.net for patient organisations in your country.
- There are many support groups on Facebook. Type the name of the condition into the search box.
- Search ContactAFamily for other patients with the same condition, and if no results exist, register yourself under MakingContact.
Unfortunately, some conditions are so rare that no support group exists. If you can't find a support group using these methods, contact your specialist, who may have details of a group. If not, please contact us using the details above and we might be able to help.
Alternatively, if no group exists, you may wish to start one. Have a look at these instructions to find out how.
Your GP is the first point of call for enquiring about genetic testing on the NHS. Your GP will refer you to a regional genetics centre if they decide it is appropriate.
If your GP decides not to refer you for a genetic test, it may be for a number of reasons. Make sure to clearly explain all of your reasons for wanting the test.
If you are unhappy with your GP's decision, you can talk to a patient organisation if one exists for your condition for advice. If there is no patient organisation for your condition, or you are unable to find advice on what to do next, please contact us.
Your GP or specialist will probably explain whether your condition is genetic but if they don't, you can always ask. If you are unsure, contact your GP or specialist. You can also find our more information about your condition using these instructions.
Have a look at our information on insurance here.
If you would like to join a clinical trial, you should talk to your GP or specialist first. Contact your support group if you'd like more information.
You can find details about clinical trials running in the UK on the UK Clinical Trials Gateway.
For information about trials running worldwide, use ClinicalTrials.gov.
If you would like to start a support group for your condition because one does not already exist, your specialist is a good starting point as they will have contact with other patients with the same condition. Ask your specialist to pass on your contact details to other patients with your condition. If there is sufficient demand, you could set up a Facebook group or website to gather the discussions.
Our members are patient organisations that support people with rare and genetic condtions. If you represent a patient organisation and would like to become a member of Genetic Alliance UK, use this form to apply.