Mary Chapman, features writer —

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…

Familial amyloid polyneuropathy (FAP) is an inherited, progressive disorder that can lead to multiple health issues affecting your everyday life. Here are some frequently asked questions (FAQs) about FAP. What causes FAP? Mutations in the TTR gene cause FAP. The mutations lead to the formation of abnormal protein deposits…

Providing constant care to someone who has a chronic disease such as familial amyloid polyneuropathy (FAP) can sap you physically, mentally, and spiritually. At times, you will need to recharge your body and mind. Respite care can give you the opportunity you need to rest and restore your energy. What…

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…

Familial amyloid polyneuropathy (FAP) is a progressive disorder that can lead to multiple health issues that affect your everyday life. Here are some ways in which family members can help support a person living with this rare disease. What is FAP? FAP patients experience severe neuropathy (damage to nerves)…

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…

Living with a chronic disease such as familial amyloid polyneuropathy (FAP) can be overwhelming. The symptoms of FAP, which may include cardiac impairment, infection, extreme weight loss, muscle wasting, and severe peripheral neuropathy, can significantly affect your quality of life and may even lead to depression. The following is…

If you or a loved one has familial amyloid polyneuropathy (FAP), massage therapy may help reduce the impact of peripheral neuropathy symptoms and lower the sense of stress that this progressive genetic disease can cause. What is FAP? FAP is a rare disease caused by mutations in the…

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)…