Published April 25, 2018 by NORD
Elisabeth Dykens, Ph.D., a clinical psychologist and researcher studying rare genetic syndromes, has long been a leader in the field of intellectual and developmental disabilities. Since she began her research …
Continue reading “Elisabeth Dykens, Ph.D.: 2018 Rare Impact Award Honoree”
Read morePublished April 25, 2018 by NORD
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 …
Continue reading “Maria Kefalas, Ph.D.: 2018 Rare Impact Award Honoree”
Read morePublished April 25, 2018 by NORD
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, …
Continue reading “Ellen V. Sigal, Ph.D.: 2018 Rare Impact Award Honoree”
Read morePublished April 25, 2018 by NORD
“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 …
Continue reading “Chris Ulmer: 2018 Rare Impact Award Honoree”
Read morePublished April 18, 2018 by NORD
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 …
Read morePublished April 12, 2018 by NORD
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 …
Read morePublished April 11, 2018 by NORD
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 …
Continue reading “NORD Issues Statement Regarding Governor Bevin’s Veto of Kentucky Senate Bill 7”
Read morePublished March 29, 2018 by NORD
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 …
Continue reading “NORD Reaction to Recently-Enacted Government Spending Bill”
Read morePublished March 22, 2018 by NORD
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 …
Continue reading “NORD Issues Statement Regarding House Vote on Right to Try”
Read morePublished March 21, 2018 by NORD
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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