Mary Chapman, features writer —

The National Organization for Rare Disorders’ (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person on June 26 for a day of learning and networking in Cleveland, Ohio. The event, which brings together the rare disease community, will take place at the InterContinental Cleveland Conference…

A new medical network connects Angelman syndrome (AS) and dup15q syndrome patients with specialized, high-quality care globally. The initiative, called the LADDER Learning Network, derives from a partnership between the Angelman Syndrome Foundation (ASF) and Dup15q Alliance. Angelman is caused by a missing or malfunctioning UBE3A…

International Angelman Day is Feb. 15 and, around the world, about 50 organizations and scores of supporters will come together to bring attention to the neurological disorder and the needs of the half-million individuals thought to be affected. Angelman syndrome (AS) is a complex genetic disease that can…

Angelman syndrome families in the United Kingdom may now request financial support for items — like tablets or adaptive equipment — that could improve a patient’s life quality under an expansion of the Angelman Syndrome Foundation (ASF) Family Fund. The ASF fund was opened in 2019 to help…

After the pandemic resulted in last year’s fundraiser being an online experience, the Foundation for Angelman Syndrome Therapeutics (FAST) will be hosting its annual Global Science Summit and Gala in Austin, Texas, Dec. 3–4. As FAST’s signature fundraiser, the event is a chance for the Angelman syndrome…

Families of Angelman syndrome (AS) patients in the U.K. have a new resource to help pay for items they could not otherwise afford, thanks to a new partnership between the Angelman Syndrome Foundation (ASF) and Angelman UK. The partnership, which includes the Canadian Angelman Syndrome Society…

The inaugural meeting of the International Angelman Syndrome Research Council, known as INSYNC-AS, focused on the translational research landscape in Angelman syndrome (AS), and on prospects for new treatments. The recent assembly of Angelman scientists and experts from around the world was pulled together by the Foundation…

At its first virtual investor event, biotech company Centogene set a bold mission: to cure 100 rare diseases within the next decade. A leader in the field of genetic diagnostics, Centogene used the June 22 event to present its strategic priorities, outlining its plans to speed the discovery…

To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…