Syndromes Without A Name (Swan UK)

About

Is the only dedicated support network available for families of children and young adults with undiagnosed genetic conditions in the UK. It is run by the charity Genetic Alliance UKOur Big Ambition is every family affected by a syndrome without a name has the support they need, when they need it, regardless of whether they have a diagnosis or not.

What we do

We enable families to make contact with others who understand the unique challenges of raising a child affected by an undiagnosed genetic condition.

We support families in hospital and at home offering 24/7 access to information and support.

We run regular free events to bring families together and provide opportunities to make precious memories. These include stay and play sessions, coffee meet ups and regional day trips to theme parks such as Peppa Pig World and Flamingo Land.

We support siblings to make new friends who understand how difficult having an undiagnosed brother or sister can be.

We educate professionals about the issues faced by families affected by a syndrome without a name and help improve services so all families receive high-quality coordinated care and appropriate testing/treatment.

Who to contact

Telephone
0300 124 0441 0300 124 0441
E-mail
info@undiagnosed.org.uk
Website(s)
Parent Organisation
Genetic Alliance UK

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