Mary Chapman, features writer —

A Patient Speakers’ Bureau is opening at the Foundation for Sarcoidosis Research (FSR) to advocate on behalf of people with this rare disease of the immune system and bring greater awareness to it. Fourteen trained and experienced patient advocates will use their personal stories to help others in understanding…

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,…

From taking part in a virtual endurance challenge to joining in a virtual cooking class, to watching several speaker presentations, advocates are set to mark Sarcoidosis Awareness Month, observed each April. World Sarcoidosis Day will be celebrated on April 13. Awareness and education are crucial to increasing the recognition,…

April is Sarcoidosis Awareness Month and the Foundation for Sarcoidosis Research (FSR) is holding a virtual Memorial Monday Candlelight Vigil on April 26 to honor those who have died from the rare disease. The hour-long webinar starts at 5 p.m. CST and will feature a special tribute presentation and speakers. The…

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…

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…

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…

The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual Living Rare, Living Stronger NORD Patient and Family Forum. The interactive, patient-focused forum will be held online June 26-27. The deadline to apply for…