Published September 29, 2020 by NORD
SCREENING NEWBORNS FOR RARE DISEASES: THE IMPORTANCE OF CONFIRMATORY TESTING AND COLLABORATION By José Abdenur, MD and Rebekah Bressi, CGC ”Newborn screening is one of the most successful public health …
Read morePublished September 25, 2020 by NORD
My name is Jan and in January 2018 life changed for my husband and me as we knew it. I was on the operating room table to have gastric sleeve surgery. I had six months …
Continue reading “Voices of Rare Cancer: Jan’s Story”
Read morePublished September 24, 2020 by NORD
At the Head of the Herd is… Susan Thornton, CEO, Cutaneous Lymphoma Foundation Susan advocates for those living with… Cutaneous lymphoma Susan is located in… Philadelphia, PA. You can connect …
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Read morePublished September 23, 2020 by NORD
There are over 7,000 rare diseases, approximately 90% do not have FDA-approved treatments, and the process of developing therapies for rare diseases involves special challenges and considerations. NORD and the Critical Path Institute (C-Path) are working together …
Read morePublished September 22, 2020 by NORD
US Senator Richard Blumenthal (D-CT) recently commented on Rare Cancer Day, coming up on September 30: “On Rare Cancer Day, I’m proud to stand with the National Organization for Rare …
Read morePublished September 21, 2020 by NORD
Krabbe Community United Research and Engagement Study (KrabbeCURES) We are pleased to announce the launch of KrabbeCURES, a collaborative effort between KrabbeConnect and the National Organization for Rare Disorders (NORD) …
Continue reading “NORD and KrabbeConnect Launch KrabbeCURES to Study Globoid Cell Leukodystrophy”
Read morePublished September 18, 2020 by NORD
An Unlikely Warrior A warrior has been defined as a brave or experienced soldier or fighter. Hardly seems like me. I was small growing up, and always the last one …
Continue reading “Voices of Rare Cancer: Emily’s Story”
Read morePublished September 17, 2020 by NORD
Head of the Herd Spotlight, Amber Freed SLC6A1 Connect At the Head of the Herd is… Amber Freed, Founder and CEO, SLC6A1 Connect. Amber advocates for… children living with the …
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Read morePublished September 16, 2020 by NORD
Washington, DC, September 16, 2020–The National Organization for Rare Disorders (NORD®) has announced the second annual Rare Cancer Day, taking place September 30, 2020. Spearheaded by the NORD Rare Cancer Coalition®, which is composed of 27 rare cancer-specific member organizations, Rare Cancer Day is observed to bring …
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Read morePublished September 11, 2020 by NORD
In this week’s Voices of Rare Cancer feature, Jeremy shares his experience with pseudomyxoma peritonei (PMP), and the role genomic testing has played in his treatment.
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