News

NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala

A violinist with vasculitis, two Texas politicians and a pharmaceutical company whose marijuana-derived therapy helps kids with Dravet syndrome were among winners of the 2019 Rare Impact Awards. Officials of the National Organization for Rare Disorders (NORD) presented the awards during a June 22 dinner attended…

Eurordis Unveils Integrated-care Initiative for Rare Disease Patients

Europe’s umbrella organization for 800 rare disease associations has developed a sweeping initiative to help the continent’s 30 million rare disease patients and their caregivers learn about their conditions, find assistance and receive treatment. Eurordis-Rare Diseases Europe hopes to improve the current piecemeal treatment and support program with a…

Rettsyndrome.org Funds Research of Rett and MECP2 Syndromes

Two scientists will receive a total of $850,000 to advance treatment and diagnostic projects in Rett syndrome and MECP2 Duplication syndrome. Rettsyndrome.org, a leading private funder of Rett syndrome research, will award Jeannie T. Lee, MD, PhD, of Massachusetts General Hospital in Boston a $600,000, two-year…