Mary Chapman, features writer —

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…

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,…

Providing constant care to a patient living with a chronic disorder such as cold agglutinin disease (CAD) can be taxing. At times, you will need to recharge your own body and mind. Respite care can give you the opportunity you need to rest and restore your energy. The following…

If you have cold agglutinin disease (CAD) and are working, you may be wondering how best to speak with your employer about your condition, or whether to disclose anything at all. Here are some considerations that may help you decide how to handle CAD in the workplace. What is…

A good night’s sleep is essential to your physical and mental health, as well as your quality of life. Everyone can benefit from good sleep hygiene including people with cold agglutinin disease (CAD). About CAD CAD is a rare autoimmune disorder in which exposure to cold temperatures, from 32…

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…

If you have a chronic condition such as cold agglutinin disease (CAD), a Japanese concept called shoshin could help you to change your perspective and see the world, and your disorder, in a different light. Based on Buddhism, shoshin means “beginner’s mind.” What is CAD? CAD is a rare…

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…