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Angelman Syndrome News

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Ultragenyx Announces First Patient(s) Dosed in Pivotal Phase 3 Aspire Study Evaluating GTX-102 in Angelman Syndrome

FAST Spain Awards First Research Grant

FAST and ASF Advocate for Crucial Legislation

CAN Spotlight: 2nd Annual Hole Out Fore Heath Golf Tournament

120 golfers participated in the Second Annual Hole Out Fore Heath Golf Tournament!

CAN Spotlight: Paddle Party for a Purpose

FAST and ASF Announce their Partnership with the Institute for Gene Therapies

RSVP for the January 2025 EL-PFDD Meeting

2024 Global Science Summit Recap

Ionis Pharmaceuticals releases information on their planned phase 3 clinical trial for Angelman syndrome

CAN Spotlight: Remi Cup 2024

The PFDD Survey is now open

Watch the Clinical Trials 101 Video

Watch the ASF | FAST Ultragenyx Community Webinar recording

CAN Spotlight: Bike for Briar’s MEGA Meat Raffle

FAST UK hosts Art for Angelman 2024

CAN Spotlight: All in for Olin Fundraiser

CAN Spotlight: Friends of James Oktoberfest

Ultragenyx Community Update October 2024

CAN Spotlight: Maddie's Mission 3rd Annual Block Party Tailgate

CAN Spotlight: 100 mile Coast to Coast Triathlon for Angelman Syndrome

CAN Spotlight: Granville Angels 2nd Annual Cornhole for a Cause

CAN Spotlight: 4th Annual Charlie’s Angels Chari-Tee Golf Tournament

2024 Global Science Summit Sneak Peeks

Celebrating the First Angelman Syndrome Congress in Latin America: A Milestone for FAST Latam

Tell Congress to support vital programs that impact our community

FAST Gains New Leaders on Board and Council

Developmental milestones and daily living skills in individuals with Angelman syndrome

CAN Spotlight: Joe Bologna’s 4th Annual Charity Golf Outing

ASF and FAST applaud the establishment of FDA Rare Disease Innovation Hub

FAST attends the 8th ASA Congress: A Collaborative Step Forward

CAN Spotlight: 2nd Annual, “If Will CAN, We CAN” fundraiser

FAST Gala Hair & Makeup Experience by Making Up Las Vegas

AS Advocates Achieve Initial Wins Resulting from Inaugural Congressional Advocacy Day

Neuren Pharmaceuticals announced top-line results from its Phase 2 clinical trial of NNZ-2591 in children with Angelman syndrome (AS). 

Hope in Action: Angelman Syndrome PFDD Meeting January 2025

CAN Spotlight: 6th Annual Links for Louie Charity Golf Tournament

Welcome Michele Golombuski, FAST’s inaugural Chief Development Officer

CAN Spotlight: Always Having Fun Foundation hosts their 7th annual Golf Tournament

Exciting News from UPenn

CAN Spotlight: Angels Within Us Charity Concert

CAN Spotlight: Payslie’s Pals 3rd Annual Cornhole Tournament Fundraiser

A new publication represents a possible small-molecule approach to potentially treat the synaptic dysfunction observed in Angelman syndrome.

Ionis announces positive detailed results from the HALOS Study of ION582 in people with Angelman syndrome

David Gurzick represents FAST and the A-BOM at the 4th Chief Patient Officer’s Summit

Ultragenyx Announces Successful End-of-Phase 2 Meeting with FDA for GTX-102 Angelman Syndrome Program

FAST LatAm holds inaugural Angelman Syndrome Congress in Bogotá

ASF & FAST Advocate for Caregivers

CAN Spotlight: Go Gus Go’s 3rd Annual Golf Event

ASF and FAST ask the FDA to establish a Rare Disease Center of Excellence

Annual Parent Meeting of the Angelman Verein and FAST Germany

FAST invited by the FDA to join advocacy-based panel discussion

Our Chief Operating Officer joins the White House Clinical Trials Forum

INSYNC 2024 Round-Up

CAN Spotlight: Harper's Hope Golf Scramble

Introducing Dr. Edwin Weeber

FAST announces establishment of associated drug development accelerator AS²Bio

FAST France - Eye Study

CAN Spotlight: Kettlebells for Kayleigh

FAST presents at the MENA Congress for Rare Diseases Angelman Symposium

Congressional Advocacy Update

Ionis announces positive topline results from Phase 1/2a trial of ION582 for Angelman syndrome

Purdue WellCast Study

Skating Angels host their Annual Hockey Tournament

Understanding Clinical Outcome Assessments (COAs) Used in Clinical Trials

2023 CAN Grand Prize Trip

Newly published article on research exploring the epigenetic landscape of Angelman syndrome

FAST’s Genetic Services & Education

April 17, 2024 Newsletter | What to Know

Ultragenyx Announces Positive Interim Phase 1/2 Data in Patients with Angelman Syndrome After Treatment with GTX-102

Dr. Cesar Ochoa-Lubinoff

FAST LatAm Updates

Welcoming FAST Germany

Inaugural Angelman Syndrome Congressional Advocacy Day Round-Up

Global Spotlight: Heather Brady

Family Advocates Urge Congress’ Support During Inaugural Angelman Syndrome Congressional Advocacy Day

How Clinical Trials Work

New FAST-TRAC grant collaboration with Dr. Alvin Huang

MENA Angelman Symposium Q&A

A Message from Lauren Black

International Angelman Day 2024 Round-Up

Rare Disease Week 2024

Warrior Wednesday: Kristina

Ultragenyx Pharmaceutical Ultragenyx announces completion of enrollment in Global Phase 1/2 Trial of GTX-102

2023 Year in Review

Spread Your Wings Gala

Introducing Ellen Koekoeckx as Global Advisor

New FAST-TRAC Grant

FAST receives Advanced Therapies Awards Nomination

Advocacy: FAST & ASF work together for policy change

Good Morning, Gus

CAN Spotlight: Hole Out Fore Heath

FAST announces new board chair, Ryan Jacob

Ryan Jacob Assumes Board Chair Role At Foundation for Angelman Syndrome Therapeutics

2023 Cure Angelman Now (CAN) Fundraising Recap

CAN Spotlight: Remi Cup

UNC Brain Development Study of Infants with AS

Ultragenyx Pharmaceutical provides AS Development Pipeline Updates

Recruitment Open for Roche Aldebaran Study

New FAST-funded Study on Brain-Derived Neurotrophic Factor Activity

New FAST and ABOM Study Focuses on Motor Function as a Critical Aspect of Angelman Syndrome

Disclaimer

This website contains information for a broad audience and may include information on current and upcoming programs that are not yet approved or accessible The information provided is for general informational purposes only and is not intended as medical advice, diagnosis, or treatment. While FAST strives to provide accurate and up-to-date information, the content on this site may not always reflect the most current research or clinical guidelines. The inclusion of clinical trial information, treatments or specific healthcare providers does not imply endorsement, recommendation or guarantee of safety, efficacy, or availability. Reliance on any information provided by this website is solely at your own risk. FAST disclaims any liability for any errors or omissions in the information provided or for any decisions made based on this information. For personalized medical advice or specific health concerns including participation in any clinical trial, please consult a qualified healthcare professional.