Supporting Undiagnosed Children's Day - SWAN UK
Rare Diseases Implementation Network is raising money for Genetic Alliance UK
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SWAN UK (syndromes without a name) supports families affected by a genetic condition so rare it often remains undiagnosed. They are the only dedicated support network for SWAN families in the UK and are run by the charity Genetic Alliance UK.
SWAN UK's aim is that every family gets the support they need, when they need it, regardless of whether they have a diagnosis or not. They work with UK based families of children and young adults up to 25 years old who are searching for a genetic diagnosis - bringing families together in a supportive community who understand the unique challenges of life without a diagnosis.
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.
£65 pays for an online disco for 40 of our families.
£100 would enable a SWAN UK parent rep to attend a healthcare conference, representing those affected by undiagnosed genetic conditions.
£500 would cover the cost of a party for 15 families, bringing them together and giving them a chance to meet face-to-face.
£1,000 would cover the cost of training and supporting a SWAN UK Parent Rep to educate local care professionals and services about undiagnosed genetic conditions.
£2,500 would cover the cost of a health and wellbeing workshop for SWAN UK parent carers.
£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
Funds raised in aid of Undiagnosed Children's Day will support SWAN UK, the support network run by Genetic Alliance UK, the national charity of over 230 patient organisations, supporting all those affected by genetic, rare and undiagnosed conditions.