Published May 7, 2018 by NORD
2018 is a big year for the rare disease community – NORD is celebrating its 35th anniversary. For the past 35 years, NORD has taken pride in being the rare …
Continue reading “NORD 35th Anniversary Blog Series: The Early Years (1980s)”
Read morePublished May 4, 2018 by NORD
For 35 years, NORD has been leading the fight to improve the lives of patients and families with rare diseases. We do this by supporting patients and organizations, accelerating research, …
Continue reading “35 Ways and Growing: NORD’s Service to the Rare Disease Community”
Read morePublished April 25, 2018 by NORD
Dr. Robert M. Campbell, Jr. is Director of the Center for Thoracic Insufficiency Syndrome (CTIS) and an Attending Physician in the Division of Orthopaedic Surgery at Children’s Hospital of Philadelphia …
Continue reading “Robert Campbell, Jr., M.D.: 2018 Lifetime Achievement Award Honoree”
Read morePublished April 25, 2018 by NORD
The GBS|CIDP Foundation International, one of the first member organizations of NORD, works towards a future when no one with Guillain-Barre syndrome (GBS), chronic inflammatory demyelinating polyneuropathy (CIDP), and related …
Read morePublished April 25, 2018 by NORD
Richard Pazdur, M.D. is the Director of the Food and Drug Administration’s Oncology Center of Excellence (OCE), which leverages the combined skills of the FDA’s regulatory scientists and reviewers with …
Continue reading “Richard Pazdur, M.D.: 2018 Public Health Leadership Award Honoree”
Read morePublished April 25, 2018 by NORD
Patrick Dunegan and his wife, Jennifer, met at church, spending time together serving their local community as Kentucky Colonels and through volunteer work with the Jewish Hospital of Louisville. Each …
Continue reading “Patrick Dunegan: 2018 Rare Impact Award Honoree”
Read morePublished 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”
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