Published July 26, 2018 by NORD
Editor’s Note: During the week of July 23-27, 2018, NORD featured pheochromocytoma as the Rare Disease of the Week in order to raise awareness for this rare type of cancer. …
Continue reading “Giving Spotlight: Honoring Mom-Mom’s Legacy with Research and Awareness”
Read morePublished July 9, 2018 by NORD
The Joshua Frase Foundation (JFF) is a non-profit organization founded with a simple yet seemingly unattainable vision: to find a cure for Myotubular Myopathy (MTM). The journey towards a cure …
Read morePublished June 27, 2018 by NORD
NORD’s Rare Disease of the Week is Levy-Yeboa Syndrome, a very rare inherited, multi-system disorder. For more information about this disorder, you can visit the Levy-Yeboa Syndrome Rare Disease Report here. The …
Continue reading “Spencer and Levy-Yeboa Syndrome, the Story of Our Son”
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 more
Your gift today fuels progress in the lab, in clinics, on Capitol Hill and for rare families who can’t wait another year for answers.
Please complete this form to access the requested resource.