Nymeria’s story
Nymeria’s story I probably read the ‘What to expect’ book a million times, but it never told me this could happen. It never once prepared me for this. It never once told me that your child could be born with a number of health problems, but there is no test, and you won’t find…
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…
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