Press Releases Archives - NORD (National Organization for Rare Disorders)

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 Laura Mullen

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 23, 2021

TOPIC: Press Releases, Featured News, Patients & Members, Advocacy, Industry

NORD Announces This Year’s Heroes of Rare Disease: The 2021 Rare Impact Award Honorees

Posted at February 2, 2021 10:17 am by Laura Mullen

Washington, DC, February 23, 2021 — Today the National Organization for Rare Disorders (NORD®) announced this year’s Rare Impact Award honorees. These outstanding individuals, organizations and industry innovators will be honored for their exceptional work benefiting the rare disease community in a virtual event streaming on June 28, 2021 at 7:00pm ET. The Rare Impact Awards program is part… Read More

Tags: Rare Impact Awards, Desmoid Tumor Research Foundation, Peter Marks, Public Health Leadership Award, Abbey S. Meyers Leadership Award, MD, Living Rare Living Stronger Patient and Family Form, Living Rare, Loxo Oncology, Incyte, alnylam pharmaceuticals, Horizon Therapeutics, Blueprint Medicines, Jade Day, Daniela Delgado, Robert Long, Kam Redlawsk, Susan Fernback, Cathleen Lutz, Natasha Shur, Jason Sicklick, Danyelle Sun, Mary Wootten, Hannah Kane, State Representative from Massachusetts, Patty Murray, Senator from Washington, Oxlumo, AstraZeneca, Koselugo, Ayvakit, Eiger Biopharmaceuticals, Zokinvy, Tepezza, Pemazyre, Eli Lilly, Retevmo, Regeneron, Inmazeb, Ridgeback Biotherapeutics, Ebanga

January 28, 2021

TOPIC: Press Releases, Featured News, Patients & Members, Advocacy, Rare Disease Day

How Will You Show Your Stripes in 30 Days? Join NORD in Spreading Awareness for Rare Disease Day®, February 28

Posted at January 1, 2021 12:13 pm by Laura Mullen

Washington, DC, January 28, 2021— Even with the world acutely aware of public health matters in light of the COVID-19 pandemic, there are millions in the United States and around the globe living with rare diseases and accompanying life-altering issues that are largely unknown to the general public. RRead More

Tags: Rare Disease Day, NORD, Peter L. Saltonstall, RAN, Rare Action Network, Cystic Fibrosis, National Organization for Rare Disorders, Show Your Stripes, covid-19, EURORDIS-Rare Diseases Europe, The Balancing Act, Lifetime Television, Behind the Mystery, Lisa Sarfaty, William Yank, Kelly Barendt, Travis Flores, Friedreich's ataxia, leukemia, RocketPharma

January 27, 2021

TOPIC: Press Releases, Featured News, Advocacy, State Report Card, Medicaid

NORD State Report Card Grades States on Policy Issues Critical to Rare Disease Patients

Posted at January 1, 2021 09:25 am by Laura Mullen

Washington, DC, January 27, 2021—Today, the National Organization for Rare Disorders (NORD®) and its Rare Action Network (RAN™) published the 6th Edition of the State Report Card, the annual report rating each state and Washington, DC on the most important issues directly affecting more than 25 million AmericanRead More

Tags: Peter L. Saltonstall, Medicaid, Rare Action Network, newborn screening, Out-of-pocket costs, Rare Disease Advisory Council, step therapy, State Report Carfd

January 26, 2021

TOPIC: Press Releases, Featured News, Patients & Members, Research, COVID-19

NORD and Partners Host FDA, CDC Leaders in Webinar Addressing Rare Disease Community on COVID-19 Vaccines

Posted at January 1, 2021 11:00 am by Laura Mullen

Washington, DC, January 26, 2021—In an effort to provide clear, useful, authoritative information to rare disease patients and caregivers on the COVID-19 vaccines, on January 15 the National Organization for Rare Disorders (NORD®), along with The ALS Association, Cystic Fibrosis Foundation and Muscular Dystrophy Association, hosted a special… Read More

Tags: Peter L. Saltonstall, FDA, CDC, US Food and Drug Administration, Dr. Stephen Hahn, covid-19, Cystic Fibrosis Foundation, Muscular Dystrophy Association, PlatformQ Health, Dr. Peter Marks, Dr. Amanda Cohn, Pfizer, Moderna, BioNTech, emergency use authorization, EUA, vaccines, The ALS Association

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