Finding support for a rare or genetic condition
Last Reviewed 25/05/2016
When someone has a health problem they often find it comforting and helpful to talk to someone with the same condition – someone who has experienced the same things that they are facing. Having a rare condition (which most genetic conditions are) can be extremely isolating because there aren’t many other people out there living with the condition. The same goes for being a parent to someone with a rare disease. Here you will find information on how Genetic Alliance UK can help you find a support group, and what to do if no support group exists.
How can Genetic Alliance UK help me find support?
We are an alliance of over 200 patient organisations, many of which are condition specific UK charities and support groups who exist to support children, families, individuals and carers. They are the experts in understanding their specific conditions and at providing the support that you need.
You can use the ‘search’ function on our members page to find groups that may be relevant to you in the UK. However, we don’t pretend to have an all encompassing list of patient organisations and so would recommend that you do a search outside of Genetic Alliance UK if you cannot find anything on our site. For example, it may be useful to you to search the name of your condition and the words ‘patient support UK’ on Google.
What if there isn’t a UK charity for my condition?
Of course, not everyone will be able to find an organisation specifically for their condition. Some may be able to find ones that they fit into under an umbrella organisation that can support them.
Often conditions fall into wider categories of disease. For example, Refsum disease is extremely rare and therefore does not have a condition specific support group for patients to find information and meet others with Refsum disease. But, Refsum disease is a metabolic condition, so people with Refsum disease can access support and information from an umbrella organisation such as Metabolic Support UK. If you want to know what type of categories your condition might fall under you will need to either find out more about the condition, or you can ask your doctor.
Others find themselves with nowhere to go. But that doesn’t mean that you can’t find support. The internet is home to a wealth of virtual areas for people to meet and talk about their experiences with rare disease. See below for some trusted sources:
As a free, informal platform Facebook is an ideal place to set up an online support group. You don’t need to have a Facebook account to search for groups – although if you do find a relevant group you will need to sign up to join and talk to people.
If there isn’t a Facebook group for your condition you can always set one up for the next person searching to find. It’s a great way to connect with others directly.
Contact Online Community
Contact Online Community is an online forum set up by Contact for parents of children with disabilities. Just enter your condition into the search function on the website and you’ll be able to see how many people have registered under the disease name.
Don’t forget to register yourself, even if there isn’t anyone else registered, so that anyone who is newly diagnosed can find you.
RareConnect shows a real understanding of the problem with rare conditions: most people with a condition will live hundreds of miles apart, in different countries, and on different continents. RareConnect is another free online platform with disease specific communities and general discussion groups. The platform was set up by EURORDIS: an alliance of rare disease patients in Europe. Discussions are translated across six languages (English, French, German, Italian, Spanish, and Portuguese).
Don’t forget to leave a message if there aren’t already discussions going, for the next person to find.
Make sure you know all the names that people use for a condition – you can do this by going to orphanet and searching for your condition. When you have found the right page you should see that in the blue table there is a list of synonyms for the condition.
If you would like help setting up a support group for your condition, please see the page on our Helping Patients Project.