NORD Welcomes Edward Neilan, MD, PhD, as Chief Medical and Scientific Officer

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Quincy, MA and Danbury, CT, May 27, 2021—The National Organization for Rare Disorders (NORD®), the leading patient advocacy organization dedicated to the identification, treatment and cure of rare diseases, announced the appointment of Edward Neilan, MD, PhD, to the new position of Chief Medical and Scientific Officer. Dr. Neilan, an internationally recognized physician-scientist and rare genetic disease expert, will oversee medical and research initiatives at NORD as part of its mission to help the more than 25 million Americans living with rare diseases.

“Dr. Neilan brings to NORD broad expertise as a physician and researcher at a pivotal time when we are growing our patient-driven research and patient care programs,” said Peter L. Saltonstall, President and CEO of NORD. “Ed’s collaborative and multifaceted work in rare diseases, including research, medical practice, clinical trial design and execution, academia, and his drive to care for rare disease patients, will greatly enhance our work. His contributions will be critical as we work to close the gap for the 90% of rare diseases that do not yet have an FDA-approved treatment or cure.”

“NORD is leading efforts to positively transform the future for rare disease patients, both in how these diseases are studied and how patients live with a rare disease, and I am thrilled to join the team!” said Dr. Neilan. “We have a shared, long-standing commitment to helping rare disease patients, and I look forward to building programs to help fuel a new era of progress and improved quality of life for all people living with rare diseases.”

In his role, Dr. Neilan will oversee the development and implementation of research activities to advance medical research and translational science for rare diseases. His areas of focus will include evolving NORD’s IAMRARE® Natural History Studies platform, a patient-powered collaborative research initiative that serves as a catalyst for the development of rare disease treatments. He will also develop additional patient-focused innovation initiatives, work to grow medical services that improve patient care, and oversee strategies encouraging institutions and companies to develop new approaches to helping rare disease patients.

Prior to joining NORD, Dr. Neilan worked at Sanofi Genzyme, a biotechnology company, where he led global medical affairs strategy and execution for the rare neurological diseases portfolio and contributed medical expertise to clinical development efforts across multiple programs. Prior to that, he served as the President of the Medical Staff at Boston Children’s Hospital. As a staff physician, clinical geneticist and the director of quality improvement in the metabolism program at Boston Children’s, Dr. Neilan directly cared for and studied patients with many genetic diseases. He is an expert in clinical trial design and drug development, has contributed data that helped support the FDA and global regulatory approvals of five new rare disease therapies, has authored or co-authored multiple clinical trial protocols and safety and regulatory reports for global health authorities, and is a past NORD grantee.

After completing his undergraduate degree at Yale University, Dr. Neilan earned his MD and PhD degrees from Stanford University. He then completed residency and fellowship training at Harvard Medical School, where he subsequently also served as a faculty member for more than 12 years. Dr. Neilan is triple board-certified in pediatrics, clinical genetics and clinical biochemical genetics. He is a fellow of the American Academy of Pediatrics and the American College of Medical Genetics and Genomics.