Mary Chapman,  features writer—

If your child has Angelman syndrome and is going through puberty, it’s best to consider all aspects of emotional development and male and female sexual health so that you can best support your son or daughter during this time. Here are some tips that may help you to do just…

As COVID-19 vaccination programs are being rolled out across the U.S., the Angelman Syndrome Foundation’s 15q Clinical Research Network (CRN) is seeking to address questions and concerns about the vaccines from Angelman syndrome (AS) patients and caregivers. The insight comes from clinicians and Angelman experts at the research network,…

The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual Living Rare, Living Stronger NORD Patient and Family Forum. The interactive, patient-focused forum will be held online June 26-27. The deadline to apply for…

Two patient advocacy groups have joined forces to present a unified voice when interacting with pharmaceutical companies and scientists looking to conduct in Angelman syndrome (AS) research. This initiative of the Angelman Syndrome Alliance (ASA) and Angelman Syndrome Foundation (ASF), called the Global Community Advisory Board, will represent…

Children and adults with Angelman syndrome can experience incontinence. Despite cognitive and behavioral problems associated with the neurological disease, you can still toilet train your child, however. Here is some information about incontinence and tips for helping you with toilet training your child. About Angelman syndrome Angelman is…

To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families, the National Organization for Rare Disorders (NORD) has launched an initiative across the U.S. Its goal is to establish a Rare Disease Advisory Council (RDAC)…

A photo of a bespectacled young boy, his red baseball cap slightly askew as he  enjoys time outside, will be featured on the front cover of an upcoming calendar in the “Same But Different” contest to raise awareness about rare disorders. “A Lovely Day Out in Kew Gardens,”…

Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare diseases, including amyotrophic lateral sclerosis (ALS). The organization’s panel of judges has pared the number of contest submissions…

The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. The initial phase of the five-year, $1-million #RAREis Scholarship Fund will include 32 scholarships — each totaling $5,000 —…

It can be quite stressful and exhausting to care for a person with Angelman syndrome, a disease characterized by a range of intellectual and physical disabilities, including limited speech capabilities, seizures and difficulties with movement. A practice called mindfulness may help you cope with your day-to-day caregiving responsibilities.