Featured News Archives - Page 3 of 92 - NORD (National Organization for Rare Disorders)

March 16, 2021

NORD Joins with the Krabbe Disease Community to Publish “Voice of the Patient” Report

Posted at March 3, 2021 02:18 pm by Valaree DonFrancesco

Washington, DC, March 16, 2021—The National Organization for Rare Disorders (NORD)®, together with KrabbeConnect, The Legacy of Angels Foundation, Partners for Krabbe Research, Hunter’s Hope and with additional support from Gain Therapeutics, Magneta Therapeutics, PassageBio and Neurogene, has published the “Voice of the Patient” report sharing the stories of patients and families impacted by Krabbe disease, also known as… Read More

Tags: press release, Krabbe disease, Voice of the Patient, externally-led Patient-Focused Drug Development Meeting, EL-PFDD, krabbe

March 4, 2021

TOPIC: Press Releases, Featured News, Research, Industry

New Report Finds Medical Treatments for Rare Diseases Account for Only 11% of US Drug Spending; Nearly 80% of Orphan Products Treat Rare Diseases Exclusively

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

Tags: NORD, FDA, orphan drugs, Orphan products, biosimilars, prescription drug spending, National Organization for Rare Disorders, RareInsights, IQVIA Institute, US Food and Drug Administration, specialty drug spending, biological pathways, Orphan Drugs in the United States: Rare Disease Innovation and Cost Trends Through 2019, generics

March 2, 2021

TOPIC: Press Releases, Featured News, Patients & Members

NORD and MedicAlert Foundation Team Up to Protect and Empower the Rare Disease Community

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

Tags: NORD, patient services, National Organization for Rare Disorders, Jill Pollander, MedicAlert, MedicAlert Foundation, Josefina Jervis, MedicAlert Assistance Program

February 28, 2021

TOPIC: Featured News, Patients & Members, Rare Disease Day

Actor/Comedian Bob Saget Shares Show Your Stripes Message for 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

Tags: Rare Disease Day, scleroderma, Show Your Stripes, Bob Saget, Full House

February 26, 2021

TOPIC: Featured News, Industry, Rare Disease Day, #NORDintheNews

NORD’s Pamela Gavin Interviewed on Health Equity by PharmaBoardroom for Rare Disease Day

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.

Tags: NORD, Medicaid, clinical trials, Rare disease advisory councils, telehealth, Project RDAC, health equity, RDACs, Pamela K. Gavin, telehealth principles