The National Organization for Rare Disorders (NORD®) is honoring a distinguished group of biopharma industry leaders, medical scientists, and patient advocates for their contributions to improving the lives of the…
Read article
Advocates Highlight Challenges Facing 1 in 4 Cancer Patients Diagnosed with a Rare Cancer WASHINGTON, D.C. and NORWELL, Mass., September 23, 2026 - Patients, caregivers, advocates, and clinicians joined the…
Read article
Free, online learning series and career exploration toolkit introduce aspiring scientists to rare disease research through real-world case studies NORWELL, Mass., Sept. 15, 2026 — The National Organization for Rare…
Read article
NORD Submits Formal Comments to CMS Urging Changes to Align the Final Rule with Congressional Intent and Protect Medically Frail People with Rare Diseases NORWELL, Mass., July 31, 2026 —…
Read article
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 moreLiving 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 moreDebra 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 moreAs 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 moreWhen 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 moreLiving 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 moreNORD developed key drug pricing principles with the needs of the rare disease community in mind.
Read moreAll 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 moreYesterday, 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 moreThe 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 morePlease complete this form to access the requested resource.
