Published May 20, 2019 by NORD
The Platelet Disorder Support Association (PDSA) is dedicated to enhancing the lives of people with Immune Thrombocytopenia (ITP) and other platelet disorders through education, advocacy, research and support. ITP is …
Read morePublished May 20, 2019 by NORD
Serving his eighth term in Texas’ 10th Congressional District, Congressman Michael McCaul has achieved significant advancements for the rare disease community. In particular, Congressman McCaul has been a strong supporter …
Continue reading “The Honorable Michael McCaul: 2019 Rare Impact Award Honoree”
Read morePublished 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 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 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.