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Manchester, Md. July 18, 2022--The KBG Foundation, a U.S.-based nonprofit organization with international partnerships working to improve the lives of people with KBG Syndrome, is happy to announce it has joined Genetic Alliance UK, a leading advocate for fast, accurate diagnosis and access to the best treatment for people with rare diseases.

The KBG Foundation already has strong ties in the UK, as geneticists Dr. Karen Low and Dr. Tazeen Ashraf serve on the Foundation’s Scientific Advisory Board. In addition, approximately 20% of the members in the Foundation’s KBG Syndrome Family Facebook group live in the UK.

“The KBG Foundation is thrilled to be part of the Genetic Alliance UK. We continually look for ways to elevate the awareness of KBG Syndrome and connect more patients with one another as well as spark more interest from the research community,” said KBG Foundation CEO and Co-Founder Annette Maughan. “Genetic Alliance UK is a strong champion in advocating for awareness and legislation that has an impact on the rare disease community.”


Genetic Alliance UK is the largest alliance of organizations supporting people with genetic, rare and undiagnosed conditions in the UK. Its members and the people they support are at the heart of everything they do. Genetic Alliance UK advocates for fast and accurate diagnosis, good quality care and access to the best treatments. The organization actively supports progress in research and engages with decision makers and the public about the challenges faced by the rare disease community. Genetic UK runs two long standing projects, Rare Disease UK and SWAN UK (syndromes without a name).

KBG Syndrome is a rare genetic disorder caused by a mutation on the ANKRD11 gene, associated with a spectrum of challenges, including developmental delays, cognitive disabilities, behavioral disorders, autism, seizures, hearing loss, skeletal anomalies, heart complications and gastrointestinal problems. Most people with KBG share at least some physical traits, including a triangular face, heavy eyebrows, curved fingers and spine, and short stature.

The KBG Foundation is a 501(c)(3) nonprofit organization, dedicated to providing support, assisting in research programs and advocating to raise awareness about KBG Syndrome. Follow us on Twitter, Facebook or LinkedIn.

Contact: Annette Maughan, CEO and Executive Director, KBG Foundation

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KBG Foundation joins Genetic Alliance UK

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