Richard Kaufman
For the past year, nearly all of the world’s attention has been on COVID-19, and rightfully so, as a once in a lifetime pandemic has wreaked havoc on the globe.
But on Friday, the Town of Greenwich hoped to shift some of the focus back on some of the lesser known diseases and ailments that families are facing everyday, by declaring Feb. 26 as Rare Disease Awareness Day.
First Selectman Fred Camillo issued a proclamation at Town Hall to John Hopper, President of the Greenwich-based Fibrolamellar Cancer Foundation (FCF), which represents one of the over 7.000 known rare diseases in the world.
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WASHINGTON, Feb. 23, 2021 /PRNewswire/ Today the National Organization for Rare Disorders (NORD®) announced this year s Rare Impact Award honorees. These outstanding individuals, organizations and industry innovators will be honored for their exceptional work benefiting the rare disease community in a virtual event streaming on June 28, 2021 at 7:00pm ET. The Rare Impact Awards program is part of the Living Rare, Living Stronger NORD Patient and Family Forum, an annual conference that brings patients and families, advocates, health care professionals and other supporters together for learning, sharing and connecting. While social-distancing remains necessary, it is vital for us to gather virtually to celebrate the contributions and progress that have been made in the fight against rare diseases. Despite the pandemic and the challenges we have faced, there are still heroes to be found among us from whom we can draw inspiration and motivatio
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WASHINGTON, Jan. 28, 2021 /PRNewswire/ Even with the world acutely aware of public health matters in light of the COVID-19 pandemic, there are millions in the United States and around the globe living with rare diseases and accompanying life-altering issues that are largely unknown to the general public. Rare Disease Day 2021 is coming up in thirty days, and the National Organization for Rare Disorders (NORD®) is inviting all to join in shining a light on the challenges faced by rare patients and families, as well as those still without a diagnosis, and the need for research into treatments and cures.
NORD State Report Card Grades States on Policy Issues Critical to Rare Disease Patients
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WASHINGTON, Jan. 27, 2021 /PRNewswire/ Today, the National Organization for Rare Disorders (NORD®) and its Rare Action Network (RAN™) published the 6
th Edition of the State Report Card, the annual report rating each state and Washington, DC on the most important issues directly affecting more than 25 million Americans living with rare diseases. Despite a year marked by devastating impacts from the COVID-19 pandemic, the State Report Card demonstrates that progress was made in many states on newborn screening, step therapy, Rare Disease Advisory Councils and other key policies. The report also notes the need for states to take additional steps to address out-of-pocket prescription drug costs for rare disease patients and to protect patient access to affordable, comprehensive health care services.
MedCity News
How augmented intelligence and NLP can help clinicians, researchers identify rare diseases
To help clinicians diagnose rare disease more quickly and accurately, many healthcare organizations are embracing technology solutions like natural language processing (NLP) tools that can create augmented intelligence workflows that facilitate the rapid search of unstructured clinical data from multiple data sources.
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As a new, first-time mom, I sometimes find myself diagnosing my daughter with rare and terrifying diseases. My baby wasn’t even a day old when I became convinced that she might have Hirschsprung Disease until the hospital nurse who changed her diaper assured me her intestines were indeed doing their job.