Published 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!”
Read morePublished October 11, 2019 by NORD
NORD 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 morePublished October 10, 2019 by NORD
On 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”
Read morePublished October 10, 2019 by NORD
On October 1, the first-ever Rare Cancer Day, an awareness day highlighting the challenges people living with rare cancers face and emphasizing the importance of early diagnosis, was marked by …
Read morePublished October 1, 2019 by NORD
Life was busy in 2010 with work, volunteering and engaging with our sons’ sports schedules. Being tired was just part of our eventful lifestyle. Consequently, when we received my diagnosis …
Continue reading “Voices of Rare Cancer: Lisa’s Story”
Read morePublished October 1, 2019 by NORD
WHAM! The news I received from my doctor was a left hook to my temple thrown by Muhammad Ali. I was just told that I had myelodysplastic syndromes (MDS). My …
Continue reading “Voices of Rare Cancer: Brian’s Story”
Read more
Your gift today fuels progress in the lab, in clinics, on Capitol Hill and for rare families who can’t wait another year for answers.
Please complete this form to access the requested resource.