Rare Disease News

Maria Kefalas, Ph.D.: 2018 Rare Impact Award Honoree

Published April 25, 2018 by NORD

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In 2009, Sociology professor Maria Kefalas, Ph.D., and her husband welcomed their fourth child to the world. They named her Calliope Joy (Cal for short) to symbolize the overwhelming joy …

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Ellen V. Sigal, Ph.D.: 2018 Rare Impact Award Honoree

Published April 25, 2018 by NORD

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A passion for patient advocacy, which has become her life’s work, stems from great personal loss for Ellen Sigal, Ph.D. After exhausting all of her options including an experimental therapy, …

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Chris Ulmer: 2018 Rare Impact Award Honoree

Published April 25, 2018 by NORD

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“Every time I meet someone new, I am focused on going into the interaction with an open mind and accepting heart,” says Chris Ulmer, co-founder and front man behind …

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TAKE ACTION: Join NORD & Over 100 Patient Organizations in Supporting the RARE Act

Published April 18, 2018 by NORD

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An exciting new piece of legislation known as the RARE Act (Rare disease Advancement, Research, and Education Act) of 2018 (H.R.5115) was recently introduced by Congressmen Carson and Costello. This legislation would …

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NORD Shares News on 35th Anniversary Celebration Presenting the Rare Impact Awards

Published April 12, 2018 by NORD

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Washington, D.C., April 12, 2018—The National Organization for Rare Disorders (NORD) has announced the latest news regarding the upcoming 35th Anniversary Celebration presenting the Rare Impact Awards on May 17 in …

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NORD Issues Statement Regarding Governor Bevin’s Veto of Kentucky Senate Bill 7

Published April 11, 2018 by NORD

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Washington, D.C., April 11, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, released the following statement regarding …

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NORD Reaction to Recently-Enacted Government Spending Bill

Published March 29, 2018 by NORD

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After months of debate, Congress passed an omnibus spending bill last week to fund the government through September 30, 2018. Within this legislation, there are both exciting investments in critical …

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NORD Issues Statement Regarding House Vote on Right to Try

Published March 22, 2018 by NORD

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Washington, D.C., March 22, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, released the following statement …

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National Organization for Rare Disorders (NORD) Announces Honorees for 2018 Rare Impact Awards

Published March 21, 2018 by NORD

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Washington, D.C., March 21, 2018—The National Organization for Rare Disorders (NORD) today announced the people, organizations, and innovators who will be honored at the 35th Anniversary Celebration presenting the Rare …

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NORD Joins Over 100 Patient and Provider Organizations in Opposition to Right to Try

Published March 21, 2018 by NORD

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In advance of another vote on the Right to Try Act scheduled to occur later today, NORD joined over 100 patient and provider organizations in sending a renewed letter to the House of …

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