Get Ready for NORD’s Patient and Family Forum, Set for June 26-27
Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual…
Articles by Mary Chapman
Cure SMA Offers US Patients Free Tools to Boost Their Independence
Cure SMA is offering free “independence assistance packages” to teenagers and adults with spinal muscular atrophy (SMA) in…
Cure SMA Offers Free Virtual Therapy Sessions
To help with stress or anxiety brought on by the COVID-19 pandemic or other issues, adult patients with spinal muscular…
Rare Disease Day at NIH, Set for March 1, Growing Year by Year
Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1,…
Pandemic Won’t Stop Rare Disease Day on Feb. 28
Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The…
NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns
While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “…
Cure SMA to Open Series of Career Panel Webinars on Feb. 16
Beginning next month, Cure SMA will offer a three-part Career Panel Webinar Series tailored to the spinal muscular atrophy…
NORD’s Caregiver Respite Program Continues Through Pandemic
Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and…
Online for 2021, Team Cure SMA Race Series Planning Variety of Events
The COVID-19 pandemic has forced many activities to be online only, but in the case of this year’s Team Cure…
NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum
The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to…