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Angelman Syndrome News

Angelman Syndrome News is a digital platform providing daily updates on research, science and advice news for Angelman Syndrome patients and caregivers.

06/11/2024

The Angelman Syndrome Foundation honored Rebecca Burdine, PhD, an Angelman researcher and mother of a child with the condition. https://buff.ly/3AuSVCS

05/11/2024

Columnist Joelene Wand describes her emotions upon learning more about her son's happy demeanor, something attributable to Angelman. https://buff.ly/3OfH5jv

08/10/2024

Early intervention therapy for her son's Angelman syndrome symptoms has been both challenging and rewarding, columnist Joelene Wand writes. https://buff.ly/3ZPJc4q

02/10/2024

The Angelman Syndrome Foundation and the Dup15Q Alliance designated a Children's Colorado clinic as a center of excellence. https://buff.ly/4dqC3uB

10/09/2024

Learning more and meeting other parents helped columnist Joelene Wand move forward after her child's Angelman syndrome diagnosis. https://buff.ly/4ee2jZR

04/09/2024

Anxiety and repetitive behaviors were found in a new study to be significant predictors of sleep problems in children with Angelman syndrome. https://buff.ly/47b4pYd

07/08/2024

Angelman syndrome treatment ION582 was well tolerated and was found to improve patients’ symptoms, Phase 1/2 trial data showed. https://buff.ly/3Wu6RnG

06/08/2024

In her debut column for "Here Comes the Sun," Joelene Wand shares the story of her son, Jude, and his Angelman syndrome diagnosis. https://buff.ly/4chP0pZ

25/07/2024

Following an end-of-Phase 2 meeting with the FDA on GTX-102 for Angelman, Ultragenyx plans to launch a pivotal Phase 3 trial by year's end. https://buff.ly/3YoB9Lj

18/07/2024

In a quest for simplicity while living with Angelman syndrome, columnist Sabrina L. Johnson decides it's time to bid readers farewell. https://buff.ly/3WCVDPb

10/07/2024

A molecule dubbed (S)-PHA533533 is able to increase expression of the UBE3A protein in mouse and cell models of Angelman syndrome. https://buff.ly/3zEHsjp

03/07/2024

Children with Angelman syndrome were found to have low bone health relative to their peers, and the decline gets worse with age, per a study. https://buff.ly/45QR1Yw

05/06/2024

After the translations became available, patient registry enrollment increased in Spain, Latin America, Asia, India, and Italy. https://buff.ly/3Vdmtv2

01/05/2024

A previously unreported mutation in the UBE3A gene was found to be the cause of Angelman syndrome for a pair of sisters. https://buff.ly/4aXFYP3

03/04/2024

Emotional/behavioral and sleep issues were found to significantly impact the life quality of Angelman syndrome patients and their parents. https://buff.ly/49pYJZE

06/03/2024

The Phase 1/2 KIK-AS clinical trial, which is testing GTX-102 in children with Angelman syndrome, has finished enrolling patients. https://buff.ly/3Tmx9YH

07/02/2024

Supporters globally are poised for International Angelman Day, set aside annually on Feb. 15, to call attention to Angelman syndrome. https://buff.ly/3w2T11U

01/02/2024

Fine motor skills in Angelman syndrome are challenging, but columnist Sabrina L. Johnson's daughter has been making strides while eating. https://buff.ly/3SeUgCw

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AWIR - Learning From Each Other

Patient advocate Liza Bernstein explains how #AWindowIntoRare will highlight what we can learn from each other as members of the #raredisease community. Join #BioNews in an online panel discussion + Q&A on #RareDiseaseDay at 3 p.m. EST Feb 28. Register: https://bit.ly/Bionews_RegisterNow

Rare Disease Day - A Window Into Rare

Patient advocate Liza Bernstein gives some insight into what will be discussed during "A Window Into Rare," our #RareDiseaseDay online panel discussion on Feb. 28. Register for this live event here: https://bit.ly/Bionews_RegisterNow #AWindowIntoRare #BioNews

A Window Into Rare - Rare Disease Day

"I have an understanding of what it feels like to feel isolated and erased": Patient advocate Liza Bernstein is hosting "A Window Into Rare," our #RareDiseaseDay panel discussion on Feb. 28. Register for this live event here: https://bit.ly/Bionews_RegisterNow #AWindowIntoRare #BioNews

We Are Rare. We are BioNews.

Angelman Syndrome News is part of the BioNews family, and 60% of us behind the scenes live with a rare condition. This is why we strive to provide you with trustworthy content, meaningful resources and a safe space. #WeAreRare. We are #BioNews. Learn more: https://bionews.com #RareDiseases #AngelmanSyndromeNews #AngelmanSyndrome #LivingwithAngelmanSyndrome #AngelmanSyndromeCommunity

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