Posts by: Mary Chapman

News, syndicated

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 ... Read more

February 4, 2021February 4, 2021

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

News, syndicated

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 ... Read more

February 3, 2021February 3, 2021

Paramedical Treatment for Adrenoleukodystrophy

Health Insight

If you or your child have adrenoleukodystrophy (ALD), you may benefit from paramedical treatments — services such as massage, and occupational and speech therapy, that have been shown to help ... Read more

January 27, 2021January 27, 2021

Respite Care for CALD Patients

Health Insight

Providing care for a child with cerebral adrenoleukodystrophy (CALD) can leave you physically, mentally, and emotionally spent. At some point, your body and mind will need replenishing. Therefore, finding respite ... Read more

January 20, 2021January 20, 2021

NORD’s Caregiver Respite Program Continues Through Pandemic

News, syndicated

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 ... Read more

January 19, 2021January 19, 2021

Art Contest Salutes Creativity of Rare Disease Communities

News, syndicated

Butterflies, ballerinas, and abstract flowers are featured among the winning artwork of this year’s Rare Artist contest, hosted by the EveryLife Foundation for Rare Diseases to heighten awareness about rare ... Read more

January 19, 2021January 20, 2021

Ways Extended Family Can Help in Care for Child With CALD

Health Insight

If there’s a child in your extended family with childhood cerebral adrenoleukodystrophy (CALD), you know how stressed and overburdened the immediate family is. Here are some ways you can help them ... Read more

January 13, 2021January 13, 2021

NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum

News, syndicated

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 ... Read more

January 13, 2021January 13, 2021

Planning for Your Future With Adult-onset Adrenoleukodystrophy

Health Insight

Learning that you have adrenomyeloneuropathy (AMN), the adult-onset form of adrenoleukodystrophy (ALD), can come as a shock. Here are some steps you might want to take to help plan for a ... Read more

December 18, 2020December 18, 2020

EURORDIS Award Contest Welcomes Photos of Life With Rare Disease

News

The annual EURORDIS Photo Award contest is inviting people worldwide to visually express what life is like with a rare disease, while raising awareness through their work of these disorders. ... Read more