Washington, DC, March 20, 2018—A majority of states are not measuring up on legislative solutions that reduce the burden of rare diseases affecting 30 million Americans, according to a new report released today by the National Organization for Rare Disorders Rare Action Network™ (NORD RAN). The 2018 “State Report Card” indicates that progress in several areas of health policy…
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Tags: 2018 State Report Card, biosimilars, Children's Health Insurance Program, Medicaid, Medical Foods, newborn screening, NORD RAN, Prescription Drug Cost Sharing, Rare Action Network, Right to Try
March 7, 2018
TOPIC: Advocacy, Events, Featured News, Get Involved, Patients & Members
Posted at March 3, 2018 12:23 pm by Christina Jensen
Thank you to our rare disease partners and every person who worked to heighten awareness on Rare Disease Day® in 2018. On this day, everyone 
comes together globally to bring attention to all 7,000 rare diseases that combined affect 30 million Americans–or 1 in 10 of us–and millions more… Read More
Tags: #RDD18Chat, 000 Mile Rare Movement, 7, Advocacy Events, Boston Children's Hospital, Georgetown School of Medicine, Handprints Across America, Keck Graduate Institute, McGill School of Medicine, NORD Student Programs, Notre Dame, Raise Your Hand Campaign, Raise Your Hand to Fight Rare Disease Research Campaign, Rare Action Network, Rare Disease Day, Rare Disease Day 2018, Rare disease research, social media, The Mighty
March 2, 2018
TOPIC: Featured News, Patients & Members, Research, Uncategorized
Posted at March 3, 2018 03:09 pm by Laura Mullen
*The following is a a guest blog posting by NORD’s Director of Research Programs, Vanessa Boulanger, originally published 2/28/18 on PCORI.org at https://www.pcori.org/blog/changing-landscape-rare-disease-research?utm_source=general`
A rare disease, by definition, affects fewer than 200,000 individuals in the United States. Up to 30 million Americans have a rare disease, and most conditions are poorly understood. The National Organization for Rare Disorders (NORD), the… Read More
Tags: grants, IAMRARE, NORD, patient-centered, PCORI, Rare disease research
February 28, 2018
TOPIC: Featured News, Medical, Patients & Members, Press Releases
Posted at February 2, 2018 09:09 am by Christina Jensen
Listening Sessions to Enable Sharing Rare Disease Experiences with FDA Review Divisions
Washington, D.C., February 28, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced a collaboration with the Food and Drug Administration (FDA) on a pilot project that would help FDA medical reviewers better… Read More
Tags: drug development, FDA, FDA Patient Affairs, Food and Drug Administration, medical reviewers, Patient Engagement, patient engagement listening sessions, patient perspective, Peter L. Saltonstall, product review
