Read the SGS GeneReview publication
Want to learn more about Schinzel-Giedion Syndrome? Read the new GeneReviews for Schinzel-Giedion Syndrome written by experts Dr Jessica Duis and Dr Bregje van Bon who are both on our Scientific and Medical Advisory Board. Read More GeneReviews is an international point-of-care resource for busy clinicians. It provides clinically relevant and medically actionable information for…
Download our Resource for Newly Diagnosed Families
Being told that your child has a diagnosis of Schinzel-Giedion Syndrome (SGS) can feel very overwhelming and frightening, and you will have lots of questions about what this will mean for your child and your family. To help support newly diagnosed families during this difficult and emotional time, we have created an information leaflet with…
Apply for our Million Dollar Bike Ride Research Grant!
2024 Million Dollar Bike Ride Pilot Grant Program The Orphan Disease Center (ODC) at the University of Pennsylvania is pleased to announce the 2024 Million Dollar Bike Ride Pilot Grant Program is now open and offering up to 42 different research grant opportunities focusing on 34 different rare diseases. This program provides a one‐year grant…
Test
Aaron’s Story Aaron has been Aaron since our 20-week anatomic ultrasound. Soon after revealing that we were having a baby boy, our obstetrician explained that Aaron’s kidneys were not growing like they should be and referred us to a perinatologist immediately. We weren’t sure what was going to happen next, but my husband and I felt…
Scott Galasinski
Scott Galasinski, Ph.D. Rare Disease Therapeutics DevelopmentScott Galasinski has worked in both biotech and pharma, including Head of BioPharmaceuticals Business Development at AstraZeneca, Head of Ultra-rare gene therapies at Novartis (previously Avexis), Executive Director at Ultragenyx, and group leader for many teams at Abbvie (previously Abbott labs). He earned his Ph.D. at the University of Colorado,…
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