Angelman Syndrome News

April 7, 2021April 7, 2021

Cannabinoid BIO017 Receives FDA’s Orphan Drug Status

Angelman Syndrome News

The U.S. Food and Drug Administration (FDA) has granted orphan drug designation to BIO017, a candidate therapy for Angelman syndrome being developed by Biom Therapeutics, the company has announced. Orphan ... Read more

March 31, 2021March 31, 2021

Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds

Angelman Syndrome News

As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life is an expensive undertaking.  But exactly how expensive — in terms of ... Read more

March 24, 2021March 24, 2021

FAST, SFARI Partner to Launch International Research Council

Angelman Syndrome News

The Foundation for Angelman Syndrome Therapeutics, known as FAST, is partnering with the Simons Foundation Autism Research Initiative (SFARI) to launch the International Angelman Syndrome Research Council — or INSYNC-AS ... Read more

March 17, 2021March 17, 2021

ORCA, Reliable Measure of Communication for Angelman, in Early Use

Angelman Syndrome News

A reliable tool for parents or caregivers to judge the quality of nonverbal communication in Angelman syndrome patients is now available, according to the Foundation for Angelman Syndrome Therapeutics (FAST), which supported work that ... Read more

March 9, 2021March 9, 2021

Pink, Green, Blue and Purple Lights Illuminated World for Rare Disease Day

Angelman Syndrome News, COVID-19 News

Many diseases have their own awareness color — breast cancer is pink, muscular dystrophy is green, and AIDS is red, for example — but what’s the significance of pink, green, ... Read more

March 8, 2021March 8, 2021

The Arc Awarded Comcast NBCUniversal Grant for Special Education Initiative

Angelman Syndrome News, COVID-19 News

A $200,000 Comcast NBCUniversal grant has been awarded to The Arc to increase access to educational resources for students of color and economically disadvantaged youngsters with intellectual and developmental disabilities ... Read more

February 25, 2021February 25, 2021

Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

Angelman Syndrome News, COVID-19 News

Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. But from a young age, he also learned ... Read more

February 23, 2021February 23, 2021

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Angelman Syndrome News, COVID-19 News

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a ... Read more

February 16, 2021February 16, 2021

Eurodis Survey: Healthcare Experience Worse for Rare Disease Patients

Angelman Syndrome News

People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted by Eurordis-Rare Diseases Europe. Indeed, rare ... Read more

February 16, 2021February 17, 2021

Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

Angelman Syndrome News

People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted by Eurordis-Rare Diseases Europe. Indeed, rare ... Read more

February 10, 2021February 10, 2021

Pandemic Won’t Stop Rare Disease Day on Feb. 28

Angelman Syndrome News, COVID-19 News

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the ... Read more

February 9, 2021February 10, 2021

International Angelman Day Supporters Hope to Draw Widespread Attention

Angelman Syndrome News

On International Angelman Day (IAD), Feb. 15 this year, supporters are hoping to draw widespread attention to the complex genetic neurological disorder and prompt conversations about the community and its ... Read more

February 2, 2021February 2, 2021

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

Angelman Syndrome News

While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs ... Read more

February 2, 2021February 3, 2021

FAST LatAm Seeks to Improve Care in Latin America

Angelman Syndrome News, COVID-19 News

The establishment of Foundation for Angelman Syndrome Therapeutics (FAST) operations in Latin America is expected to improve the quality of life for the roughly 42,000 people in that region who ... Read more

January 26, 2021February 26, 2021

COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say

Angelman Syndrome News, COVID-19 News

The two COVID-19 vaccines that recently received emergency approval from the U.S. and other worldwide regulatory agencies are expected to pose little risk to the rare disease community, including to ... Read more