Washington, DC, August 29, 2019–The National Organization for Rare DisordersⓇ (NORD) has announced a day devoted to raising awareness about rare cancers. Spearheaded by the NORD Rare Cancer Coalition, which is comprised of 24 rare cancer-specific Member Organizations, Rare Cancer Day will be observed on October 1 to highlight the challenges people living with rare Read more >
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NORD Posts New Addition to Video Library – Pediatric Movement Disorders: Guidance for Parents & Physicians
“The video features Mered Parnes, MD, Director of the Pediatric Movement Disorders Clinic at Texas Children’s Hospital in an interview he conducted recently with staff from NORD’s Educational Initiatives Department.”
Information on current NATPARA® shortage
“NORD has reached out to the Food and Drug Administration (FDA) on behalf of patients who are now not able to access the drug. We have asked FDA to continue working with Takeda to resolve this quality issue as quickly as possible.”
A Joint Op-Ed from NORD and Friends of Cancer Research: Despite Criticism, FDA is Doing What is Right By Rare Cancer Patients
“The National Organization for Rare Disorders and Friends of Cancer Research have supported legislative efforts to ensure that patients have access to therapies that meet the same rigorous FDA standards as therapies for serious non-rare conditions.”
NORD Patient Assistance Program for 2020
“Programs will be opening on a rolling basis, please look for communications in your email and mail in this month and coming months.”
