Ana de Barros, PhD, managing science editor —

With the U.S. midterm elections now less than two weeks away, patient advocacy groups are solidly focused on a range of hot-button issues, from the Orphan Drug Tax Credit and affordable health insurance to future funding for rare disease research. Yet “whether Democrats take over the House or Senate,…

To celebrate the Canadian Angelman Syndrome Society’s (CASS) 25th anniversary, the society hosted its 2018 annual conference April 20-21, in Toronto, Ontario. The conference, held at the Omni King Edward Hotel in downtown Toronto, provided the Angelman syndrome (AS) community a weekend of team-building, education and empowerment. The…

The U.S.’s fifth Angelman syndrome clinic has opened at Vanderbilt University Medical Center in Nashville. The Angelman Syndrome Clinic at Vanderbilt was established with support from the Angelman Syndrome Foundation. It will offer a variety of resources, preventing patients from having to go to several facilities across the nation…

Purdue University is conducting a telehealth study to help identify autism symptoms in infants with rare neuro-genetic diseases who might otherwise not be able to receive specialized care. Results of the study may help children receive tailored therapy earlier than they normally would. The five-year study will focus on prospective…

On the last day of February every year, hundreds of patient organizations worldwide get together to raise awareness for rare diseases. This year, to celebrate Rare Disease Day on Feb. 28, the Angelman Syndrome Foundation (ASF) is challenging all families to share their story to inspire the Angelman…

Shire, Microsoft and Rare Diseases Europe have formed an alliance to try to  accelerate the time it takes to diagnose children with rare diseases such as Angelman syndrome. Meanwhile, Shire said it is holding or taking part in 40 events on Rare Disease Day Feb. 28 to raise…

To mark Feb. 15, International Angelman Day, the Angelman Syndrome Foundation (ASF) has compiled a list of f 15 simple ways to help raise awareness for Angelman syndrome worldwide and in your hometown: Ask a local pediatrician if he or she is aware of Angelman syndrome. Help doctors learn about…

People with Angelman syndrome and other rare diseases need more psychosocial support, an Oregon State University study reports. A lot of the support can be similar, cutting across the types of disorders that patients have, the team said. It’s common for people with rare diseases to have more anxiety, depression, pain and…

A group of designers from around the world will be showcasing their latest designs on April 28, 2018, in New York City while the Foundation for Angelman Syndrome Therapeutics (FAST) raises funds to support research for a cure for Angelman syndrome (AS). Credit: Katherine Angelique…

The Angelman Syndrome Foundation (ASF) plans to award one- or two-year grants of up to $100,000 to projects that test new ideas regarding the biology behind Angelman syndrome and treatments for the genetic disease. The ASF conducts biannual calls for proposals through its research funding program. Applications are accepted on a rolling…