Apr. 21, 2020
NORD’s Director of Research Programs Publishes Article on Rare Disease Research in the 2020 Rare Neurological Disease Special Report
Posted by Valaree DonFrancesco
The National Organization for Rare Disorders (NORD®) is excited to spotlight an article written by NORD’s Director of Research, Vanessa Boulanger, MSc, published in the 2020 Rare Neurological Disease Special Report. The feature, “Now Is The Time For Research On Rare Diseases,” details the importance of natural history studies, the role of patients and caregivers as research partners, and the power of collaboration. Generating evidence and actionable insight to benefit the rare disease community is central to NORD’s approach to research. Our team’s involvement in collaborative projects that span the research continuum, including how studies are designed, data is collected, information disseminated, and datasets leveraged and combined to support research and scientific advancement, in addition to our NORD-driven research initiatives, demonstrates our strong commitment to driving forward progress for all rare disease communities.
Please contact the team at [email protected] to learn more about NORD’s research initiatives.