Published November 29, 2019 by NORD
Hello! My name is Marissa and I had the privilege of joining NORD as a member of the Research Team earlier this year. Like many, my road to NORD began …
Continue reading “A First Time for Everything: Marissa’s Running for Rare Story”
Read morePublished November 22, 2019 by NORD
One of the first caregivers to participate in the Rare Caregiver Respite Program, Debra shared with NORD how she used her award. “I was able to meet and have dinner …
Continue reading “Rare Caregivers Corner: Debra’s Story”
Read morePublished November 20, 2019 by NORD
This week, HealthDay published an article entitled “Don’t Give Up: Parents’ Intuition Spots a Rare Illness Before Doctors Do” on patients persistently advocating for their sick child although doctors were …
Read morePublished November 14, 2019 by NORD
At NORD, we know that patient-powered initiatives change the world.
Read morePublished November 12, 2019 by NORD
I 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 morePublished November 4, 2019 by NORD
Did 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 morePublished November 1, 2019 by NORD
On 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 morePublished November 1, 2019 by NORD
Patient 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 morePublished October 29, 2019 by NORD
On 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 morePublished October 23, 2019 by NORD
Health 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!”
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