Rare Disease News

Head of the Herd: Taylor Kane, Founder and President, Remember the Girls

Published July 17, 2020 by NORD

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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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Head of the Herd: Beverley Francis-Gibson, President and Chief Executive Officer, Sickle Cell Disease Association of America

Published June 19, 2020 by NORD

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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 …

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Head of the Herd: Emile Najm, KAT6A Foundation

Published May 22, 2020 by NORD

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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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Head of the Herd: Michele Sloan, Foundation to Fight H-abc

Published March 20, 2020 by NORD

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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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Head of the Herd: Akiva Zablocki, The Hyper IgM Foundation

Published March 6, 2020 by NORD

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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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Head of the Herd: Bonnie Royster, CdLS Foundation

Published February 14, 2020 by NORD

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At the head of the herd is… Bonnie Royster, Executive Director, Cornelia de Lange Syndrome (CdLS) Foundation Bonnie most frequently checks her… Facebook Bonnie advocates for those living with… Cornelia …

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Head of the Herd: Mike Morris, TANGO2 Research Foundation

Published January 31, 2020 by NORD

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At the head of the herd is… Mike Morris, Co-Founder & President, TANGO2 Research Foundation Get in touch with Mike on… Facebook and Twitter Mike advocates for those living with… …

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Head of the Herd: Leah Schust Myers, FamilieSCN2A Foundation

Published January 17, 2020 by NORD

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At the head of the herd is… Leah Schust Myers, Founder, Executive Director and Research Committee Chair, FamilieSCN2A Foundation Leah advocates for those living with… SCN2A Disorders Leah is located …

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