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Oct. 10, 2017

TOPIC: Press Releases

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

Posted by Jennifer Huron

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 of Development.

“As NORD continues its efforts to help patients and address the needs of the rare disease community, we are ecstatic to welcome these seasoned and passionate subject matter experts to the team,” said NORD Chief Operating Officer Pamela K. Gavin.  “Education and research are core areas of NORD’s mission and, without fundraising, none of our work as a nonprofit would be possible.  We are excited for the community to get to know Vanessa, Sika and Alexa at NORD’s Rare Diseases & Orphan Products Breakthrough Summit next week, and beyond.”

As Director of Research Programs, Vanessa Boulanger, MSc, is responsible for leading the growth and development of NORD’s research department. Current initiatives include the IAMRARETM Registry Program and NORD’s research grants program, which has resulted in the development of at least two FDA-approved orphan products. Previously, Vanessa held research and leadership positions at the Dana-Farber Cancer Institute and the Harvard T.H. Chan School of Public Health, where she earned her Master of Science degree, and a lecturer position at Regis College in the School of Health Sciences Public Health Program. She has more than 10 years of experience addressing health, human rights and social inequalities from a range of health and development perspectives.

NORD’s Director of Education Programs, Sika Dunyoh, manages initiatives designed for healthcare professionals and patients, including Continuing Medical Education (CME) programs. Sika has more than 10 years of experience in creating and managing programs for scientific societies and in developing engaging educational resources for scientific, technical and medical (STM) professionals and researchers.  She is also the founder of Shine Light on Rare Diseases, which is an initiative she established in memory of her sister who passed away from a rare disease. The goal of Shine Light on Rare Diseases is to highlight the prevalence of rare diseases and to help people with rare diseases receive faster diagnoses to help save and improve the quality and length of their lives.

In her role as Vice President of Development, Alexa Moore oversees all fundraising, development and major special events activities for NORD.   She has more than 15 years of experience working with companies and leaders in the life sciences industry to design and deliver engaging and timely educational content. Alexa has worked with NORD and the rare disease community for several years on the Rare Diseases & Orphan Products Breakthrough Summit. In addition, Alexa is a supporter of the National Down Syndrome Congress raising over $3,000 in individual contributions and a Fulbright Scholar who pursued post-graduate studies in Germany.

For more information about NORD and how to get involved with the rare disease community, visit

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