Mary Chapman, features writer —

The National Organization for Rare Disorders (NORD) welcomes the advancement, by the U.S. House of Representative’s Energy and Commerce Health Subcommittee, of “critical” bills that encourage rare disease therapy development and improve patient access to care. The nonprofit organization, which supports rare disease patients through advocacy, research funding, education,…

With the theme “Capabilities and Possibilities,” this year’s aHUS Awareness Day — observed annually on Sep. 24 — seeks to highlight the achievements and aspirations of those living with atypical hemolytic uremic syndrome (aHUS). Overarchingly, the annual global event aims to call attention to aHUS itself, to educate…

“Awareness through Togetherness” is the theme for supporters around the world to mark this year’s aHUS Awareness Day, on Sept. 24. The 8th annual event seeks to call attention to atypical hemolytic uremic syndrome (aHUS) and the needs of the community, as well as to spotlight advancements in research…

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…

From participating in an organ donor registration drive to sharing a community video project, supporters globally are poised to mark the 7th annual aHUS Awareness Day on Sept. 24. The event seeks to heighten visibility around atypical hemolytic uremic syndrome (aHUS), highlight the latest research, and underscore the needs…

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,…

If you are living with a chronic disease such as atypical hemolytic uremic syndrome (aHUS), a concept called shoshin may help to change your perspective, allowing you see the world, and your disorder, in a different light. What is shoshin? The word shoshin comes from Zen Buddhism, and means “beginner’s…

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 presentation by a Nobel laureate recently recognized for her work on a gene editing tool. The free, virtual…