Published May 20, 2019 by NORD
Representative Sarah Davis is a dedicated champion of the rare disease community in her home state of Texas. She is currently serving her fifth term as the State Representative for …
Continue reading “The Honorable Sarah Davis: 2019 Rare Impact Award Honoree”
Read morePublished May 20, 2019 by NORD
Houston native Deborah Skolaski is the loving grandmother of Cori, a seven year-old living with metachromatic leukodystrophy. MLD is a genetic disorder that affects the nerves, muscles and other organs, …
Continue reading “Deborah Skolaski: 2019 Rare Impact Award Honoree”
Read morePublished May 20, 2019 by NORD
Living through a lengthy diagnostic odyssey is unfortunately very common for rare disease patients. Madison “Maddie” Shaw’s journey to diagnosis took place over an intense and frustrating two and a …
Continue reading “Madison Shaw: 2019 Rare Impact Award Honoree”
Read morePublished 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 7, 2019 by NORD
NORD developed key drug pricing principles with the needs of the rare disease community in mind.
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 9, 2019 by NORD
The 2019 Living Rare, Living Stronger NORD Patient and Family Forum promises to be an unforgettable weekend for patients, families, medical professionals and students. Download the agenda now and register by April 26 to …
Continue reading “Living Rare, Living Stronger full agenda with speakers now available”
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