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Archives for: June 18th, 2019

NORD Launches Digital Education Initiative with PlatformQ Health

Written by Christina Jensen 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 Christina Jensen 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, 2017—The 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

NORD Awards New Research Grants for Rare Disease Research

Written by Jennifer Huron on February 24, 2017

Washington, D.C.—February 24, 2017—The National Organization for Rare Disorders (NORD), the leading independent, nonprofit organization committed to the identification, treatment, and cure of rare disorders, has awarded seven new research grants to fund rare disease research.

Research grants awarded for 2016 Requests for Proposals include:

For the study of Alveolar Capillary… Read More

Alone we are rare. Together we are strong.®

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.