We have compiled a list of organisations and other sources of guidance, advice and practical help that you may find useful if you or a member of your family, has been diagnosed with a rare genetic condition.
This list is intended as an overview and is by no means exhaustive. For example, there are many wonderful condition specific charities and patient groups that are not included here. If you are struggling to find the information and support you need please contact us and we will do our best to signpost to you to the appropriate place.
Sandcastle Retreats
A directory of accessible, inclusive, holiday accommodation providers.
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