Published 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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Read morePublished July 17, 2020 by NORD
At the head of the herd is… Taylor Kane, Founder and President, Remember the Girls Taylor advocates for those living as… Carriers of all X-linked diseases Taylor is located in… …
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Read morePublished June 19, 2020 by NORD
At the head of the herd is… Beverley Francis-Gibson, President and Chief Executive Officer, Sickle Cell Disease Association of America Beverley advocates for those living with… sickle cell disease. How …
Read morePublished June 12, 2020 by NORD
I was diagnosed with toxic acute progressive leukoencephalopathy, a rare brain disease that took me from a high functioning and able-bodied individual to locked in syndrome, in six months. This …
Continue reading “Rare Reflections: Jacob’s Story”
Read morePublished May 22, 2020 by NORD
At the head of the herd is… Emile Najm, Chief Executive Officer, KAT6A Foundation Emile most frequently checks his… Facebook account Emile advocates for those living with… A rare syndrome …
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Read morePublished March 20, 2020 by NORD
Head of the Herd: Michele Sloan, Foundation to Fight H-abc At the head of the herd is… Michele Sloan, Director, Foundation to Fight H-abc Michele most frequently checks her… Facebook …
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Read morePublished March 6, 2020 by NORD
At the head of the herd is… Akiva Zablocki, President, The Hyper IgM Foundation Akiva most frequently checks his… https://www.facebook.com/Akiva Akiva advocates for those living with… hyper IgM syndrome Akiva …
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