National Organization for Rare Diseases (NORD) Welcomes Edward Neilan, MD, PhD, as Medical and Scientific Director


QUINCY, Mass. and DANBURY, Conn., May 27, 2021 / PRNewswire / – 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 post of Chief Medical and Scientific Officer. Dr. Neilan, an internationally renowned physician-scientist and specialist in rare genetic diseases, will oversee medical and research initiatives in NORD as part of his mission to help the more than 25 million Americans living with rare diseases.

“Dr. Neilan brings to NORD a wealth of expertise as a physician and researcher at a pivotal time as we develop our patient-focused research and patient care programs,” said Peter L. Saltonstall, President and Chief Executive Officer. NORTH direction. “Ed’s collaborative and multifaceted work in the field of rare diseases, including research, medical practice, clinical trial design and execution, academia, and his dedication to caring for patients with rare diseases. rare, will greatly improve our work. His contributions will be essential at the end of our work. 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 of rare disease patients, both in the way these diseases are studied and in the way patients live with a rare disease, and I am delighted to join the team!” Dr Neilan said. “We have a common, long-standing commitment to helping rare disease patients, and I look forward to creating programs to help fuel a new era of progress and improve the quality of life for all people with rare disease. 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 interest will include the evolution of NORD’s IAMRARE® natural history studies platform, a collaborative patient-focused research initiative that serves as a catalyst for the development of rare disease treatments. He will also develop other patient-focused innovation initiatives, work to develop medical services that improve patient care, and oversee strategies that encourage institutions and businesses to develop new approaches to help patients with rare diseases. .

Prior to joining NORD, Dr Neilan worked at Sanofi Genzyme, a biotechnology company, where he led the strategy and execution of global medical affairs for the rare neurological disease portfolio and brought his medical expertise to development efforts. clinic in several programs. Previously, he was president of the medical staff at Boston Children’s Hospital. As a staff physician, clinical geneticist, and Director of Quality Improvement for the Metabolism Program at Boston Children’s, Dr. Neilan has directly treated and studied patients with many genetic diseases. He is an expert in clinical trial design and drug development, provided data that helped support the FDA and global regulatory approvals of five new rare disease therapies, wrote or co-authored several protocols. ‘clinical trials and safety and regulatory reports for global health authorities. , and is a former NORD Fellow.

After graduating from undergraduate degree at Yale University, Dr. Neilan received his MD and PhD Stanford University. He then completed residency and stock market training at Harvard School of Medicine, where he was then a faculty member for over 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.

About the National Organization for Rare Diseases (NORD®)
The National Organization for Rare Diseases (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD started out as a small group of patient advocates who formed a coalition to unite and mobilize support to pass the Orphan Medicines Act 1983. Since then, the organization has led the way in voicing the needs of the community. diseases, by pursuing supportive policies, continuing education, advancing medical research and providing services to patients and families for those who need them most. With more than 330 disease-specific member organizations, more than 15,000 Rare Action Network advocates in all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of people affected by rare diseases. Visit

SOURCE National Organization for Rare Diseases (NORD)

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