March 4, 2021
TOPIC: Press Releases, Featured News, Research, Industry
Posted at March 3, 2021 11:35 am by Jennifer Huron
Washington, DC, March 4, 2021—As US policymakers consider options to address rising health care costs while still meeting the needs of patients, a new report from IQVIA has found that rare diseases account for just 11% of medical invoice spending in the United States, and 79% of all orphan products treat only rare diseases. The report also highlights… Read More
March 2, 2021
TOPIC: Press Releases, Featured News, Patients & Members
Posted at March 3, 2021 10:17 am by Valaree DonFrancesco
Washington, DC — March 2, 2021 More than 25 million Americans living with rare diseases face many challenges, including finding information about their condition, accessing quality health care, and paying for treatments. With help from the National Organization for Rare Disorders (NORDⓇ), the rare community… Read More
February 28, 2021
TOPIC: Featured News, Patients & Members, Rare Disease Day
Posted at February 2, 2021 07:52 am by Valaree DonFrancesco
Actor, comedian and director Bob Saget invites you to Show Your Stripes today! While largely recognized for his role as Danny Tanner on the hit sitcom “Full House,” his personal connection to the rare community is less well known. Bob lost his sister to scleroderma and has participated in… Read More
February 26, 2021
TOPIC: Featured News, Industry, Rare Disease Day, #NORDintheNews
Posted at February 2, 2021 01:16 pm by Valaree DonFrancesco
PharmaBoardroom, an international pharmaceutical industry media outlet providing industry trends, news and reports geared to senior professionals, recently interviewed Pamela Gavin on the importance of health equity and what NORD is doing towards achieving equity for the rare community in the United States.
The interview can be read in its entirety here.
February 25, 2021
TOPIC: Featured News, Patients & Members, Advocacy, Rare Disease Day, #NORDintheNews
Posted at February 2, 2021 12:14 pm by Valaree DonFrancesco
The ALS Association’s podcast, Connecting ALS, interviewed NORD Director of Membership Debbie Drell for a special Rare Disease Day episode, streaming now. The conversation touched on the origins of Rare Disease Day, storytelling, NORD’s “Show Your Stripes” campaign, and how the organization’s patient advocacy work has continued during the pandemic.