Mary Chapman, features writer —

From honoring healthcare professionals and scientists to spotlighting “patient heroes,” activities are underway for this year’s Vasculitis Awareness Month, dubbed #VAM2022. VAM is observed each May to bring attention to the rare autoimmune disorder and all its forms, as well as the people it affects. International Vasculitis Day is also…

Winding up its 35th year, the U.S.-based Vasculitis Foundation (VF) is making its annual call for support for its programs and initiatives, which aim to help existing and future vasculitis patients. Key among them is to train more clinicians for treating ANCA-associated vasculitis (AAV). Calling itself the world’s…

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,…

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,…

The Vasculitis Foundation‘s Excellence in Diagnostics (V-RED) award program — which has grown into an awareness campaign — is this year honoring an endocrinologist, a primary care physician, and a critical care doctor. Launched in 2014, the V-RED awards seek to recognize medical providers globally who made critical…

Activities ranging from sporting wearable art to highlighting “patient heroes” are underway to mark Vasculitis Awareness Month (VAM), set aside each May to call attention to this rare autoimmune disease. International Vasculitis Day is May 15. Awareness and education are crucial to increasing the recognition, diagnosis, understanding, and management of…

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…

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 hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…