Genetic Alliance UK


SWAN UK is the only dedicated support network for families affected by a syndrome without a name (SWAN) - a genetic condition so rare it often remains undiagnosed.
by 69 supporters
RCN 1114195

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SWAN UK supports families affected by a syndrome without a name (SWAN) - a genetic condition so rare it often remains undiagnosed.

Each year thousands of children are born with a syndrome without a name, and without a diagnosis, families can be left with little to no support.

Our mission is to make sure that no family is left behind.

Before we found SWAN UK, my family and I felt isolated, we didn't fit in anywhere. Nobody seemed to be able to help us or understand what we were going through. Then we found SWAN UK, they have been like family ever since. I've made amazing friends, met some awesome and inspiring people, found the support and understanding we needed and finally found the place we fitted in.

We run fun events for the whole family, provide information through events and newsletters and have an extensive network of volunteer Parent Reps. We educate professionals about the issues faced by families affected by a syndrome without a name and seek to help improve services so that all families can access high-quality coordinated care and appropriate testing or treatment.

Here are some examples of how far your money can go towards supporting SWAN UK families:

£30 pays for us to send resources out to be shared with families going through genetic testing.

£50 pays for an online disco for 40 of our families.

£100 pays for a whole family to attend a big day out at a major attraction.

£500 will cover the cost of a party for 15 families, bringing them together and giving them a chance to meet face-to-face.

£1,000 covers the cost of training and supporting a SWAN UK Parent Rep to educate local care professionals and services about undiagnosed genetic conditions.

£2,500 allows us to provide couples counselling to help families process the emotional impact of raising an undiagnosed child.

£5,000 will allow us to run information events around the UK to help parents understand why genetic conditions can be so difficult to diagnose

SWAN UK is a family support network run by Genetic Alliance UK, the national charity of over 230 patient organisations, supporting all those affected by genetic, rare and undiagnosedd conditions.

About the charity

Genetic Alliance UK

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RCN 1114195
We are a national alliance of over 220 charities and patient support groups. Together we advocate and campaign for the 3.5 million people in the UK with a rare, genetic or undiagnosed condition - improving diagnosis, care coordination and treatment options. We run Rare Disease UK and SWAN UK.

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