News - Page 4 of 143 - NORD (National Organization for Rare Disorders)

February 24, 2021

TOPIC: Featured News, Patients & Members, Advocacy, Patient Stories, Rare Disease Day

National Attention for Rare Disease Day Airs on Lifetime Television

Posted by Valaree DonFrancesco

This morning, a special Rare Disease Day segment of Behind the Mystery, the recurring rare disease series on Lifetime Television’s award-winning morning show The Balancing Act, aired at 7:30am ET. The impactful segment featured NORD’s Director of Strategic Planning, Lisa Sarfaty, sharing facts about rare disease and information on how to get involved with Rare Disease Day.

Tags: rare disease community, Rare Disease Day, NORD, National Organization for Rare Disorders, The Balancing Act, Lifetime Television, Behind the Mystery, Lisa Sarfaty, WEGO Health, Brandstar

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 by Valaree DonFrancesco

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

February 22, 2021

TOPIC: Featured News, Patients & Members, Patient Stories, Rare Disease Day, #NORDintheNews

Rare Disease Patient Advocate Tristan Lee Shares His Story with WebMD for Rare Disease Day

Posted by Valaree DonFrancesco

Tristan Lee, a 37-year-old Pennsylvania man who has lived with sickle cell disease since birth, is a patient advocate with Sickle Cell Disease Association of America, a NORD member organization. Today, Tristan shares his personal story for Rare Disease Day with WebMD, with information about NORD noted at the end of the article. Read the piece here.

#NORDintheNews

Tags: Rare Disease Day, Patient Advocate, sickle cell disease, Sickle Cell Disease Association of America, Tristan Lee

February 19, 2021

TOPIC: Featured News, Patients & Members

NORD Offers Emergency Relief to Rare Disease Patients and Families Impacted by Natural Disasters

Posted by Valaree DonFrancesco

Sometimes a helping hand is most needed when an unexpected emergency arises. NORD is committed to supporting rare disease patients and families and offers several programs to assist them in times of crisis.

NORD’s Hurricane and Natural Disaster Emergency Relief Fund provides financial assistance to those who are diagnosed with a… Read More

Tags: Patient Assistance, NORD Hurricane and Natural Disaster Emergency Relief Fund, disease-specific Emergency Relief Programs, natural disaster, snowstorms, severe weather

February 19, 2021

TOPIC: Featured News, Patients & Members, Advocacy, Head of the Herd

Head of the Herd: Chandra Clark, VHL Alliance

Posted by Valaree DonFrancesco

At the Head of the Herd is… Chandra Clark, Executive Director, VHL Alliance. Today she shares her passion for incorporating diversity, equity, and inclusion within the rare disease space.

Prior to joining VHL Alliance, how did you get exposure to diversity, equity and inclusion (DEI)? How do those experiences carry over to your work with the von Hippel-Lindau syndrome (VHL)… Read More

Tags: VHL Alliance, von Hippel-Lindau, DEI, health equity, Chandra Clark, centers of excellence

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February 24, 2021

National Attention for Rare Disease Day Airs on Lifetime Television

Posted by Valaree DonFrancesco

February 23, 2021

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

Posted by Valaree DonFrancesco

February 22, 2021

Rare Disease Patient Advocate Tristan Lee Shares His Story with WebMD for Rare Disease Day

Posted by Valaree DonFrancesco

February 19, 2021

NORD Offers Emergency Relief to Rare Disease Patients and Families Impacted by Natural Disasters

Posted by Valaree DonFrancesco

February 19, 2021

Head of the Herd: Chandra Clark, VHL Alliance

Posted by Valaree DonFrancesco

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Alone we are rare. Together we are strong.®