Health Editor’s Note: Even though some diseases are rare, with only a few hundred to several thousand people having one, added together there are approximately 30 million people in the U.S. alone with a rare disease. Children make up half of these numbers and many of these rare diseases are life-threatening….Carol
NIH-supported research survey to examine impact of COVID-19 on rare diseases community
For the millions of people living with a rare disease, the novel coronavirus disease COVID-19 presents challenges, from potential reduced access to needed medical care to possible heightened anxiety and stress. A new online survey launched by the National Institutes of Health-supported Rare Diseases Clinical Research Network (RDCRN) aims to find out how the COVID-19 pandemic is impacting individuals with rare diseases, their families and their caregivers. Results will help the rare disease research community shed light on the needs of people with rare diseases during the COVID-19 pandemic and other potential health crises, in addition to informing future research efforts.
The RDCRN, led by NIH’s National Center for Advancing Translational Sciences (NCATS), in collaboration with nine other NIH Institutes and Centers, currently is made up of 20 recently funded clinical research consortia focused on better understanding how rare diseases progress and developing improved approaches for diagnosis and treatment. Scientists from different disciplines at hundreds of clinical sites around the world work together with about 140 patient advocacy groups to study more than 200 rare diseases, including immune system disorders, heart, lung and kidney disorders, brain development diseases and more.
“As a leader in fostering innovative, ……..