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Schinzel-Giedion Syndrome Foundation

Schinzel-Giedion Syndrome Foundation

Providing support for families caring for a child with Schinzel-Giedion Syndrome.

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Scientific & Medical Advice

In this photo: Avery (age 5)

Scientific & Medical Advice

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In this photo: Avery (age 5)

Scientific & Medical Advice

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Nuala’s Story

Nuala’s Story

Read about Nuala and Ophelia at Rare Disease UK Nuala’s Story Share this article and raise awareness of Schinzel-Giedion Syndrome. Back to Homepage

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Schinzel-Giedion Syndrome Awarded € 2 000 000

Schinzel-Giedion Syndrome Awarded € 2 000 000

Research grant of over 2 Million Euros ($2.5Million) offers new hope for children with rare condition Schinzel-Giedion Syndrome Contact: Nuala Summerfield Mob: +44 (0)7957 168815 Email: nuala@sgsfoundation.org January 27th 2021; Crawley, West Sussex, UK: Funding from two major European grants has been awarded to an international group of researchers to find treatments for the devastating…

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International SGS Awareness Day

International SGS Awareness Day

International Schinzel-Giedion Syndrome Awareness Day 13 November 2020 By Emma Hudson, Secretary and Trustee of The Schinzel-Giedion Syndrome Foundation and mum to 2-year-old Jude who has SGS Happy Birthday to Us! 13 November 2020 marked one year since the The Schinzel-Giedion Syndrome Foundation was registered as an official charitable organisation with the Charity Commission in…

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Recurrence Risk

In this photo: Caroline Recurrence Risk This is a very important question for parents with a child diagnosed with Schinzel-Giedion Syndrome, considering having another child. In this photo: Caroline Recurrence Risk This is a very important question for parents with a child diagnosed with Schinzel-Giedion Syndrome, considering having another child. This information has been written…

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Dr. Hans Bjornsson, M.D., Ph.D.

Dr. Hans Bjornsson, M.D., Ph.D.

Dr. Hans Bjornsson, M.D., Ph.D.Dr. Bjornsson did his graduate work under the supervision of Andrew P. Feinberg, a leader in the field of epigenetics. He then joined the combined program in pediatrics and human genetics at Johns Hopkins. During his residency training, Dr. Bjornsson worked with Dr. Hal Dietz, a leader in the field of developing therapeutic…

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Dr. Rocío Acuña Hidalgo, Ph.D.

Dr. Rocío Acuña Hidalgo, Ph.D.

Dr. Rocío Acuña Hidalgo, M.D., Ph.D.Rocío Acuña Hidalgo, Ph.D. is a medical doctor and human geneticist based in Berlin, Germany. Her expertise lies in bringing together Next Generation Sequencing (such as exome sequencing) and molecular biology to unravel the molecular mechanisms of mutations that lead to human disease. Rocío completed her Ph.D. at Radboud University Medical Center, where she studied the molecular…

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