Published May 20, 2019 by NORD
Debra Regier, M.D., Ph.D. is the Director of Genetic and Genomic Education at Washington, DC’s Children’s National Medical Center, attending physician in genetics and metabolism and Primary Investigator (PI) for …
Continue reading “Dr. Debra Regier: 2019 Rare Impact Award Honoree”
Read morePublished May 20, 2019 by NORD
As a clinical and molecular geneticist, Wendy Chung, M.D., Ph.D. has been working with patients with rare genetic diseases and their families for the last 20 years. She is the …
Continue reading “Dr. Wendy Chung: 2019 Rare Impact Award Honoree”
Read morePublished May 20, 2019 by NORD
When Donna Appell’s one-year-old daughter Ashley exhibited frequent and unexplainable bruising, Donna turned to her toddler’s pediatrician for answers. She was told that the bruising was “easier to see” because …
Continue reading “Donna Appell, R.N.: 2019 Rare Impact Award Honoree”
Read morePublished May 10, 2019 by NORD
Living Rare, Living Stronger will bring the rare community together with physicians, medical students, and allied health professionals for a program of learning, sharing and connecting.
Read morePublished May 7, 2019 by NORD
NORD developed key drug pricing principles with the needs of the rare disease community in mind.
Read morePublished April 30, 2019 by NORD
All U.S. and international researchers are encouraged to apply by the initial application deadline of June 18, 2019 Washington, DC, April 30, 2019 – The National Organization for Rare Disorders® …
Read morePublished April 26, 2019 by NORD
Yesterday, a NORD Member Organization and IAMRARE™ Registry Client, The DHPS Foundation, officially launched their patient registry, DHPS Patient Registry. NORD’s IAMRARE Registry Program was built to address the special needs of …
Continue reading “NORD IAMRARE DHPS Patient Registry Launched”
Read morePublished April 18, 2019 by NORD
The 2019 Living Rare, Living Stronger NORD Patient and Family Forum is a conference in which patients and caregivers can gain insights and practical tools for living their best lives …
Read morePublished April 17, 2019 by NORD
This 5th annual issue is the largest to date and focuses on the progress in medical science, genetics, and neuromuscular diseases Parsippany, NJ – April 16, 2019 – Frontline Medical Communications (FMC) …
Continue reading “The 2019 Rare Neurological Disease Special Report Is Now Available”
Read morePublished April 16, 2019 by NORD
NORD has published a report in its Rare Disease Database on primary distal renal tubular acidosis (dRTA), a rare genetic disorder that affects the ability of the kidneys to remove …
Continue reading “NORD Publishes Report on Primary Distal Renal Tubular Acidosis”
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