This week is rare disease week! Saturday February 29th is International Rare Disease Day! In celebration of this day of awareness, we are selling Be the Hope! Be the Change! t-shirts. Check out our shirts at Bonfire. There are many ways to help spread awareness of SETBP1 disorder. Here are just a few ideas: – […]
SETBP1 Society and the University of Pennsylvania Orphan Disease Center invite you to participate in the Million Dollar Bike Ride on Saturday, June 13, 2020 to raise money for research in rare diseases, including SETBP1 disorder. 100% of registration and fundraising money will go towards SETBP1 research! Not only that, but the Orphan Disease Center […]
The University of Pennsylvania Orphan Disease Center accepted grant applications for a one-year grant for $67,943 for SETBP1 disorder research through their Million Dollar Bike Ride Pilot Grant program! The recipient of this SETBP1 disorder grant is Dr Carl Ernst from McGill University in Montreal, Canada. He is a leading researcher dedicated to our SETBP1 […]
Listen to Eric and Haley Oyler share the story about their diagnostic journey, seeking answers to their child’s developmental delays, speech delays and signs of atypical autism. Ultimately, they find answers in genetic testing with the Whole Exome Sequencing (WES) test. Their child has SETBP1 disorder which is a rare neurodevelopmental disorder caused by a […]
