Published December 6, 2021 by NORD
Mark Laabs is the Founder and Chairman of the Rare Cancer Research Foundation (RCRF). He shares a passion for driving research infrastructure with diversity, equity, and inclusion for rare cancer …
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Read morePublished September 28, 2021 by NORD
David Arons is the Chief Executive Officer of the National Brain Tumor Society (NBTS). He shares a passion for incorporating diversity, equity, and inclusion within the rare cancer and rare …
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Read morePublished February 19, 2021 by NORD
At the Head of the Herd is… Chandra Clark, Executive Director, VHL Alliance. Today she shares her passion for incorporating diversity, equity, and inclusion within the rare disease space. Prior to …
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Read morePublished November 13, 2020 by NORD
At the Head of the Herd is… Charlene Son Rigby, President and Cofounder, STXBP1 Foundation Charlene advocates for those affected by… STXBP1 encephalopathy Charlene is located in… San Francisco, CA …
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Read morePublished October 9, 2020 by NORD
At the Head of the Herd is… Jennifer Canvasser, Founder and Director, Necrotizing Enterocolitis (NEC) Society Jennifer advocates for those affected by… necrotizing enterocolitis (NEC) Jennifer is located in… Davis, …
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 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 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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