In this page you will find further information, resources, and support organisations which we hope you will find useful in your journey. Navigating the sections below, you will find a description of the resource and a link to their website.
Your Rare Condition
It can be difficult to find easy-to-read and reliable information about rare conditions. Some useful websites can be found below, remember it’s important to use trustworthy sources of information.
Finding your condition online
1. Contact provides an A-Z of conditions, providing digestible information for patients and families wanting more information.
2. Orphanet provides a large database of rare conditions. It can be useful for finding out which classification of rare condition you have by using the ‘Classifications’ sidebar. It also provides an encyclopaedia of many rare conditions, and where available, an encyclopaedia targeted at the public.
3. Support for those without a diagnosis is available in the form of SWAN (syndromes without a name). Its website provides information for families and schools, as well as providing information on how NHS Regional Genetics Services may be able to help.
4. Unique is a UK charity for families and individuals affected by rare chromosome and gene disorders. Its website provides information and support, including Rare Genetic Conditions Guides and Other Resources such as condition-specific guides and practical resources for families.
1. Genetic Alliance UK has a variety of resources available for learning the basics.
https://geneticalliance.org.uk/information/learn-about-genetics/
2. Genomics England provides an overview of genetic testing in the UK, including the history and science behind it.
3. Our Courses webpage under Education and Engagement lists courses we recommend to those wanting a higher level of learning opportunities, especially those working in healthcare.
Support
1. As well as providing learning resources, Genetic Alliance UK also has a directory which may be useful in finding a UK based organisation tailored to your condition.
2. Similarly, but a global organisation, RareConnect is the home of international online discussion forums for patients and families of rare disease.
3. Facebook: you may be able to find a group for your condition using their search tool. If you cannot find a community you’re looking for, it is possible one hasn’t been made already, so it may be worth thinking about making one
1. Contact is an organisation which provides financial, emotional and educational support to families of children with disabilities. It can be used to search for grants, or general financial advice for families and carers.
https://contact.org.uk/help-for-families/information-advice-services/cost-of-living-advice/
2. The UK government website provides a guide to help they offer through your local council.
