NORD’s Rare Cancer Coalition (RCC) worked hard in 2021 to raise awareness for rare cancers and tackle issues that patients and caregivers face, such as access to care, treatments, and research. At the start of 2021, NORD and our RCC members partnered with PlatformQ, one of the nation’s leading providers of digital Continuing Medical Education … Devamını oku
Rare Disease Day Recap Rare Disease Day took place on February, 28, 2022 and successfully raised awareness for the 7,000+ rare diseases that impact over 300 million people globally. NORD is proud to partner with EURORDIS (Rare Diseases – Europe) and others all around the world to drive an international campaign that shines a light … Devamını oku
Clayton, MO, April 19, 2022 —Today, April 19, 2022, The Snow Foundation for Wolfram Syndrome Research and the National Organization for Rare Disorders, Inc. launched the largest-ever study to research Wolfram syndrome, a disease that causes diabetes insipidus, diabetes mellitus, optic atrophy, and deafness as well as various other possible disorders. Wolfram syndrome currently has … Devamını oku
I am a parent to a daughter with genetic disorder 22q11.2 deletion syndrome (commonly known as DiGeorge syndrome). She was born on July 1, 2021 and diagnosed on July 23 through a chromosomal microarray blood test. The entire month of July was a whirlwind. Her health issues began with seizures at home around nine days … Devamını oku
On Tuesday, July 19, join rare disease advocates and coalition partners across the nation for a social media day of action to urge Congress to pass the Safe Step Act (HR 2163/S 464). This bill would help people with rare diseases access prescribed medications in a safe and timely manner, by ensuring step therapy is … Devamını oku
NORD’s annual rare disease conference on October 17 and 18 in Washington, DC will showcase two days of insightful speakers, discussions, and in-person connection WASHINGTON, DC, August 18, 2022 – The NORD® Rare Diseases & Orphan Products Breakthrough Summit® – the most highly anticipated, global rare disease conference of the year, every year – will be … Devamını oku
C-Path, NORD and FDA hosted an annual workshop September 13-14 to spotlight the impact of their innovative data and analytics platform on rare disease drug development TUCSON, Ariz. and WASHINGTON, DC, September 15, 2022 — The Rare Disease Cures Accelerator-Data and Analytics Platform initiative (RDCA-DAP®) hosted an all-day workshop and annual meeting September 13 and … Devamını oku
Annie Achee is the President and Community Education/Research Liaison of the National Leiomyosarcoma Foundation (NLMSF). Leiomyosarcoma is a rare sarcoma (cancer) that originates in smooth tissue (including fat, muscle, nerves, tendons, and blood and lymph vessels) and can occur anywhere in the body. For more information, see the NORD Rare Disease Report on Leiomyosarcoma. Annie … Devamını oku
C-Path, NORD and FDA to host annual workshop September 13-14 to highlight the impact of their innovative data and analytics platform on rare disease drug development TUCSON, Ariz. and WASHINGTON, DC, August 25, 2022 — The Rare Disease Cures Accelerator-Data and Analytics Platform initiative (RDCA-DAP®) will host its in-person annual workshop on September 13 and … Devamını oku
The following commentary by NORD President and CEO Peter Saltonstall originally appeared in The Well. Rare diseases are, by definition, uncommon. For a disease to qualify as rare, it must affect fewer than 200,000 Americans — or less than .06 percent of the U.S. population. While the odds of being diagnosed with any individual rare … Devamını oku
