Published 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 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 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 …
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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 15, 2020 by NORD
September is Newborn Screening Awareness Month, and I’d like to share our family’s experience with it, and why we think every parent should know more about this incredible test, that …
Continue reading “A Newborn Screening Reflection: Sarah’s Story”
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.
Read morePublished September 4, 2020 by NORD
Rare Cancer Day is an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. Spearheaded by the NORD Rare Cancer …
Read morePublished August 28, 2020 by NORD
At the Head of the Herd is… Deb Ayres, President, The Avalon Foundation. Deb advocates for… patients with pediatric hypophosphatasia (HPP) and their families. Deb is located in… Toledo, Ohio. How Deb got here… When my daughter Avalon (“Avie”) was ten …
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Read morePublished August 14, 2020 by NORD
At the Head of the Herd is… Katie Wright, Director, The VEDS Movement (a division of The Marfan Foundation) Katie advocates for those living with… Vascular Ehlers-Danlos Syndrome (VEDS) How …
Read morePublished July 31, 2020 by NORD
At the head of the herd is… Seth Rotberg, Co-Founder, Our Odyssey Seth most frequently checks his… Twitter or Instagram accounts Seth advocates for… Young adults between the ages of …
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