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Archives for: November 20th, 2019

#NORDintheNews: NORD Featured in Syndicated Article on Parents’ Intuition and Rare Disease

Written by Laura Mullen on November 20, 2019

This week, HealthDay published an article entitled “Don’t Give Up: Parents’ Intuition Spots a Rare Illness Before Doctors Do” on patients persistently advocating for their sick child although doctors were initially unable to pinpoint the condition. The article, featuring an interview with Sika Dunyoh, NORD’s Director of Education Programs, was… Read More

NORD Launches Digital Education Initiative with PlatformQ Health

Written by Lisa Sencen on June 18, 2019

New program by the trusted voice and leader in the rare disease community aims to increase clinician preparedness and improve the care of patients living with rare diseases

 

BOSTON, MA and WASHINGTON, DC, June 18, 2019 – The National Organization for Rare Disorders (NORD)Ⓡ, the leading independent nonprofit organization… Read More

NORD Expands and Enhances its Rare Disease Database®, a Primary Resource for Millions of People Affected by Rare Diseases

Written by Laura Mullen on January 3, 2019

Washington, D.C., January 3, 2019 – Today, the National Organization for Rare Disorders (NORD) announced the completion of extensive additions and improvements to its Rare Disease Database, which serves as a valuable resource for patients, families and caregivers in need of easy-to-understand information about rare diseases. The enhancements… Read More

Free Educational Webinar Policy 101: Role of Government in Rare Disease Policy and Tips to Advocate for You and Your Loved One

Written by Lisa Sencen on February 20, 2018
Your local and state governments, as well as the Federal government, each play an integral role in enacting and implementing policy that affects the health and well-being… Read More

NORD Announces Three New Hires to Lead Research, Education and Business Development Programs

Written by Jennifer Huron on October 10, 2017

Danbury, CT, October 10, 2017The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization dedicated to helping the 30 million Americans with rare diseases, announces the appointment of three new hires: Vanessa Boulanger, Director of Research Programs; Sika Dunyoh, Director of Education Programs; and Alexa Moore, Vice President… Read More