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January 24, 2020

TOPIC: Featured News, Patients & Members

NORD Launches New Patient Assistance Program Providing Support to Eligible NMOSD Patients

Posted at January 1, 2020 11:40 am by Laura Mullen
NORD is pleased to launch an addition to our robust rare disease programs providing financial support to the rare disease community. NORD’s new Neuromyelitis Optica Spectrum Disorder (NMOSD) Program provides financial assistance to eligible individuals diagnosed with this rare, chronic disorder.
For more information on the NMOSD program, please contact NORD: phone: 203-202-8833 or email: [email protected]  More information on NORD… Read More

January 23, 2020

TOPIC: Featured News, Medical, Patients & Members, Press Releases, Research

NORD Joins with Pyruvate Kinase Deficiency Community to Publish Historic “Voice of the Patient” Report

Posted at January 1, 2020 02:29 pm by Laura Mullen

Washington, DC, January 23, 2020–The National Organization for Rare Disorders (NORD)®, the Foundation for Rare Blood Diseases (SZB) and the pyruvate kinase deficiency community together made history on September 20, 2019 with patients and families sharing their experiences directly with the US Food and Drug Administration (FDA) and other key stakeholders, and first-of-its-kind testimony from the heavily impacted Amish… Read More

January 20, 2020

TOPIC: Featured News, Patients & Members

NORD Reaches 300 Members!

Posted at January 1, 2020 08:00 am by Laura Mullen

At NORD we are extremely proud to welcome our 300th member organization! Our Odyssey is a national nonprofit supporting chronic and rare disease young adult patients by providing social and emotional support in the hope of improving their quality of life. Not only is Our Odyssey the 300Read More

January 17, 2020

TOPIC: Advocacy, Featured News, Patients & Members

Head of the Herd: Leah Schust Myers, FamilieSCN2A Foundation

Posted at January 1, 2020 08:35 am by Laura Mullen

At the head of the herd is… Leah Schust Myers, Founder, Executive Director and Research Committee Chair, FamilieSCN2A Foundation 

Leah advocates for those living with… SCN2A Disorders 

Leah is located in… Gettysburg, PA 

How Leah got here… 

My son had his first seizure a few days after his first birthday. Our… Read More

January 16, 2020

TOPIC: Advocacy, Featured News, Press Releases, Rare Disease Day

NORD Issues a Rare Decree: Show Your Stripes™ for Rare Disease Day®!

Posted at January 1, 2020 10:21 am by Laura Mullen

Washington, DC, January 16, 2020–The National Organization for Rare Disorders (NORD®), the leading independent nonprofit organization representing over 25 million Americans living with rare diseases, is issuing a Rare Disease Day decree: Show Your Stripes! This campaign takes its cue from the majestic zebra, known for its distinctive stripes. NORD is imploring the world at large to show… Read More