Written by Valaree DonFrancesco 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
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
Written by Valaree DonFrancesco 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
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
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
