Remember Undiagnosed Children’s Awareness Day

Undiagnosed Children’s Awareness Day was honored on April 30th, 2021 to increase awareness and understanding of the impact and prevalence of undiagnosed genetic conditions. SWAN UK (Syndromes Without A Name) hosted a Zoom meeting to commemorate the day and to discuss sequencing programs for undiagnosed families. Learn more about Undiagnosed Children’s Awareness Day here!

SWAN UK 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 UK. SWAN UK aims to to support those affected by undiagnosed genetic conditions by developing services and raising awareness about the unique challenges faced by affected families. More details about SWAN’s mission can be found here: https://www.undiagnosed.org.uk/

Genetic Alliance UK offers information and support to families and individuals with genetic conditions, including concerning reproductive techniques, diagnosis, medical research, healthcare and access to treatments. Genetic Alliance’s website is located here: https://geneticalliance.org.uk/.

The Rare Genomics Institute (“RG”) salutes SWAN and Genetic Alliance’s efforts to increase global recognition, provide information and support for families caring for a loved one with an undiagnosed or rare genetic condition.

Undiagnosed Children’s Awareness Day is an opportunity for RG, SWAN, Genetic Alliance and the broader rare disease community to change the global discussion about rare diseases. You can be a change agent by joining us or otherwise supporting us now.

SWAN estimates 1 in 20 children are born with a genetic disorder and that 60% may not ever receive a diagnosis. Let’s work together to change that. Join RG to help families with undiagnosed genetic conditions and stay tuned for more information on next year’s Undiagnosed Children’s Awareness Day!