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Archives for: September 25th, 2018

NORD Receives Grant from Anthem Foundation for Expansion of Rare Disease Database®

Written by Laura Mullen on September 25, 2018

Washington, D.C., September 25, 2018 – The National Organization for Rare Disorders (NORD) announced today it is enhancing its Rare Disease Database which serves as a valuable source of information for patients, families and caregivers in need of easy to understand language on rare diseases that are frequently… Read More

Mackenzie’s Mission

Written by Lisa Sencen on April 17, 2018

In this guest blog post submitted by Mackenzie Boedicker and her mother, Deb, we share the story of one woman’s mission to alleviate the struggles for those who live with amyloidosis. Mackenzie was diagnosed in 2017 and is doing well as a full-time research assistance and founder of a… Read More

Tweets From NORD

Thank you for your patience - we have rescheduled the Gene Therapy: Yesterday, Today and Tomorrow webinar and hope… https://t.co/pOAVVdLcJjyesterday
NORD applauds HOGR for holding this important upcoming hearing on Admin's recent changes to the medical deferred ac… https://t.co/VrrP74g8aWyesterday
Grab your clubs and join CurePSP on September 9 to honor Andy Szczerba and raise awareness for PSP! It is sure to b… https://t.co/0jz7PTsSm3yesterday
NORD’s Hurricane Emergency Relief Fund provides limited help to #raredisease patients impacted by natural disasters… https://t.co/8irqzi1V0Uyesterday

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Copyright ©2019 NORD - National Organization for Rare Disorders, Inc. All rights reserved. NORD is a registered 501(c)(3) charity organization. Please note that NORD provides this information for the benefit of the rare disease community. NORD is not a medical provider or health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments. Patients must rely on the personal and individualized medical advice of their qualified health care professionals before seeking any information related to their particular diagnosis, cure or treatment of a condition or disorder.