NORD Names New Director of Membership

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Washington, D.C., April 4, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, announces the recent hire of Debbie Drell as Director of Membership.  In her role, Debbie will be responsible for overseeing NORD’s Membership programs, which support the collective and individual needs of rare disease patient organizations, patients, and patient advocates through education, research, advocacy, and mentorship.

“Debbie brings a wealth of personal and professional advocacy experience to NORD, including grassroots engagement and building strong rare disease patient communities,” said NORD Chief Operating Officer Pamela K. Gavin.  “NORD has always been about people coming together to tackle big issues in rare diseases; Debbie’s expertise, enthusiasm, and ability to create change will help us continue to work together to make a difference for patients across the country.  We are excited to welcome her to the team.”

Debbie joins NORD with more than 18 years of nonprofit experience in public health education, awareness and advocacy.  Most recently, she worked for the Pulmonary Hypertension Association, a NORD member organization.  During this time, she helped to grow the organization’s network of support groups from 80 to nearly 300; to develop new services tailored for patients of all ages; and to convene the largest gathering of PH patients in history.  Debbie says working in rare diseases is a cause close to her heart and she was inspired to enter the field after her sister, Alex, was diagnosed with PH.

Membership has been a core component of NORD’s mission since the organization was founded in 1983 on the principles of collaboration and a united voice. NORD operates with the understanding that the rare disease community is stronger when it works together.  Its long-running Membership program has grown over the years to more than 260 rare disease patient organizations.  The Rare Action NetworkSM, NORD’s individual Membership platform, has grown to more than 2,000 advocates since launching last year.

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


About the National Organization for Rare Disorders (NORD)®

The National Organization for Rare Disorders (NORD)® is the leading independent advocacy organization representing all patients and families affected by rare diseases.  NORD is committed to the identification, treatment and cure of the 7,000 rare diseases that affect 30 million Americans, or 1 in every 10 people.  NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. For more than 30 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research, and providing patient and family services for those who need them most.  NORD represents more than 260 disease-specific member organizations and their communities and collaborates with many other organizations in specific causes of importance to the rare disease patient community.