Author Archives: Mary Chapman

V-RED Awards Honor 3 Physicians for Early Vasculitis Diagnoses

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 Abound for Vasculitis Awareness Month

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, Set for March 1, Growing Year by Year

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…

Pandemic Won’t Stop Rare Disease Day on Feb. 28

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…

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs for prescription medicines and access to affordable comprehensive care — still need attention. Those were the findings of the…

NORD’s Caregiver Respite Program Continues Through Pandemic

Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a…