April 15, 2024
See a letter to the Angelman community. Ultragenyx reported positive interim data from the ongoing Phase 1/2 study in patients living with deletion genotype Angelman syndrome after treatment with investigational GTX-102. From company press release: “The totality of these […]
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March 7, 2024
Washington D.C., – The Angelman Syndrome Foundation (ASF) and the Foundation for Angelman Syndrome Therapeutics (FAST) are hosting the inaugural Angelman Syndrome (AS) Congressional Advocacy Day in Washington, D.C. Angelman syndrome advocates from all corners of the country will head […]
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January 13, 2024
The Angelman Syndrome Foundation is proud to announce a new collaboration with Cedars-Sinai Guerin Children’s to launch a new clinic for patients with Angelman syndrome, a rare neuro-genetic disorder. The clinic is led by Cesar Ochoa-Lubinoff, MD, MPH, director of […]
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October 13, 2023
The Angelman Syndrome Foundation and the Dup15q Alliance are proud to announce plans to launch a new clinic at Children’s Hospital of Philadelphia (CHOP) to better serve the Angelman and Dup15q communities. “We are excited to join other Angelman and […]
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October 11, 2023
On September 23, The Angelman Center brought together around 50 Families at the First National Gathering of families with Angelman syndrome (I Ogólnopolski Zlot Aniołków). The meeting was organized by the families from the Angelman Syndrome Project (Projekt Zespół Angelmana). […]
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June 21, 2023
Roche has made the difficult decision not to move forward with a new clinical trial for rugonersen and has initiated the search for an external partner to take over the development. The conclusion of this trial undoubtedly brings feelings of […]
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June 19, 2023
AURORA, IL – Angelman Syndrome Foundation (ASF) proudly announces the launch of the Jacob Pritzker Fellowship Program in honor of late board president Fred Pritzker. The Jacob Pritzker Fellowship Program was created to address the ever-increasing need for more physicians who […]
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April 18, 2023
Angelman Syndrome Foundation and Canadian Angelman Syndrome Society Partner to Expand Care for Individuals with Rare Disorder Two organizations leading activism for the rare and severe neuro-genetic disorder Angelman syndrome have entered a partnership to expand their reach. Angelman […]
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