NORD Submits Formal Comments to CMS Urging Changes to Align the Final Rule with Congressional Intent and Protect Medically Frail People with Rare Diseases NORWELL, Mass., July 31, 2026 —…
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Additional institutions in California, New York and North Carolina strengthen a national network connecting more than 170 academic medical centers, research institutions, and children’s hospitals to advance rare disease care…
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At NORD, we know that patient-powered initiatives change the world.
Read moreI attended the NORD 2019 Summit in Washington, DC a few weeks ago. It was my first chance to attend this conference organized by the National Organization for Rare Disorders …
Continue reading “Reflections of a First Time NORD Summit Attendee: Matthew’s Story”
Read moreMy husband and I got away for a whole week! We went to a resort where we could relax by the pool and catch up on much needed sleep. To …
Continue reading “Rare Caregivers Corner: Cathy’s Respite Story”
Read moreDid you know that November is National Family Caregivers Month? It’s a time to recognize family caregivers for their selfless devotion and dedication to supporting loved ones. NORD’s Rare Caregiver …
Continue reading “November is National Family Caregivers Month”
Read moreOn Friday, November 1, 2019, the White House announced the nomination of Dr. Stephen Hahn, MD, as the next US Food and Drug Administration (FDA) commissioner. In response, the National …
Continue reading “NORD supports Dr. Stephen Hahn’s nomination for FDA commissioner”
Read morePatient AirLift Services (PALS) recently provided air and ground transportation for a mom and son who went through years of not knowing the cause of bone pain, fatigue, brain fog …
Read moreOn the heels of the 2019 Rare Diseases and Orphan Products Breakthrough Summit, NORD’s Rare Action Network (RAN) Volunteer State Ambassadors made their way to Capitol Hill on October 23, …
Continue reading “NORD’s Rare Action Network Mobilized for a Successful Hill Day”
Read moreHealth and Human Services Secretary Alex Azar speaking at the NORD Summit on October 22, 2019 Washington, DC, October 23, 2019–Earlier this week, the National Organization for Rare DisordersⓇ …
Continue reading “2019 NORD Summit Breaks Records with Largest Attendance Ever!”
Read moreNORD has created a short video to help parents, pediatricians and others recognize early signs of pediatric movement disorders and know what to do if they suspect a child may …
Read moreOn September 5, 2019, Takeda issued a recall of NATPARA® (parathyroid hormone), due to rubber particulates originating from the rubber septum of the NATPARA cartridge. As of October 9, NATPARA® …
Continue reading “Information on current NATPARA® shortage”
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