Our Sandcastle Connections Service is here to help families facing rare genetic conditions build meaningful connections, reducing feelings of isolation. Connecting with others in similar situations can provide essential support and lead to lasting friendships and peer support networks. If your family is affected by a condition without a specific charity and you are looking to connect with others, we may be able to help in one of the following ways:
Family Matching
As our charity has grown, we have built a large database of families across the UK living with a wide range of conditions. We may be able to match you with others living with the same rare genetic condition. If you’d like us to search our database on your behalf, please email us at info@sandcastletrust.org, and we will send you a form to complete.
There are other rare condition charities that offer family matching services as follows:
- Rare Chromosome Disorders – Unique
- Inherited Metabolic Conditions – Metabolic Support UK
Community Connections
Additionally, if you’re facing a particular challenge or seeking advice on a specific topic and would like to connect with other families who may share similar experiences (even if the conditions are not the same), we can reach out to our community for suggestions or help you connect. For example, if you are about to embark on the transition from child to adult services and want to connect with others doing the same. Again, please email us at info@sandcastletrust.org for more information.
