Mary Chapman, features writer —

If you or a family member has cold agglutinin disease (CAD), you may be interested in getting involved with health advocacy efforts, which promote health and access to care. What is CAD? CAD is a rare autoimmune disorder in which exposure to cold temperatures, those between 32 to 50…

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…

After receiving a diagnosis of cold agglutinin disease (CAD), you may experience emotions that range from relief to shock. You also may go through the stages of grief, which is completely normal. The following overview may help you understand what to expect, and how to cope with any emotional responses…

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…

To advance understanding of cold agglutinin disease (CAD) and better support patients globally, Sanofi Genzyme has launched a global registry. The CADENCE (Cold Agglutinin Disease Real World Evidence) Registry is the first major prospective data repository for CAD patients. Following is information about the registry and its potential benefits. About CAD…

Avoiding cold conditions, dressing appropriately for the cold, or living in warm climates is often sufficient to manage mild cases of cold agglutinin disease (CAD). However, if you have a more severe case of the disease, you may require medical treatment. Here’s a summary of those medications. About CAD CAD…

To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families, the National Organization for Rare Disorders (NORD) has launched an initiative across the U.S. Its goal is to establish a Rare Disease Advisory Council (RDAC)…

Living with a chronic disease such as cold agglutinin disease (CAD) can lead to anxiety, stress, and feelings of isolation. Recreational therapy may work to improve your psychological and physical well-being. About CAD CAD is a rare autoimmune disorder in which exposure to cold temperatures, those between 32 to…

A photo of a bespectacled young boy, his red baseball cap slightly askew as he  enjoys time outside, will be featured on the front cover of an upcoming calendar in the “Same But Different” contest to raise awareness about rare disorders. “A Lovely Day Out in Kew Gardens,”…