Peter L Saltonstall

NORD’s President and Chief Executive Officer.

Washington D.C.office

Peter presently serves on the Humana Cares Advisory Board, the FDA Cellular, Tissue & Gene Therapies Advisory Committee (CTGTAC), the Child Neurology Foundation Board, and the International Rare Diseases Consortium, IRDiRC, Interim Executive Committee. Peter has over 30 years of healthcare experience in both for-profit and not-for-profit environments, as well as extensive federal and commercial market knowledge. Peter has held senior positions within a number of major academic medical centers and organizations, including Harvard’s Brigham and Women’s Hospital, Tufts-New England Medical Center and St. Elizabeth’s Medical Center of Boston. Peter also has extensive startup and private equity experience. Through his career, he has developed a broad understanding of complex healthcare issues, and he remains committed to improving the healthcare system to benefit patients.

E. Michael D. (“Mike”) Scott

Board chairman of NORD

Mike is the current Board chairman of NORD and an Executive Vice President of Vox Medica, Inc., a privately held health care communications group of companies based in Philadelphia, where he has worked in a variety of positions since moving from the UK to the USA in 1985. He has spent his entire 40-year career in areas related to scientific and health care-related communications. His primary personal interests today are in professional and patient communications related to the development and clinical use of products for the diagnosis and treatment of various forms of cancer and rare disorders, and in issues affecting access to these therapies for appropriate patients. Mr. Scott is also a member of the Board of Directors of the International Myeloma Foundation and the President and Co-Founder of Prostate Cancer International.

Russell Teagarden

Senior Vice President of Medical and Scientific Affairs

Danbury, CT office

At NORD, Russell is focused on research and registry initiatives, clinical intelligence, education and publication programming and strategic alliance development. He joined NORD after 19 years at Medco Health Solutions where he was chiefly involved in drug technology assessment, coverage policy development and clinical programming and oversight. Prior to joining Medco, he practiced as a clinical pharmacist in the Chicago teaching hospital community. Dr. Teagarden has a BS in Pharmacy from the University of Illinois College of Pharmacy, a Master of Arts degree in research methodology from Loyola University of Chicago, and a Doctor of Medical Humanities degree from Drew University. He has published in the areas of clinical research, pharmacy, health policy, ethics, education and the humanities.

Mary Cobb

Senior Vice President of Membership & Organizational Strategy

Danbury, CT office

Mary Dunkle

Vice President of Communications at NORD

Danbury, CT office

Mary oversees NORD’s educational programs for patients/families, medical professionals and the public.  Before joining NORD, Mary was a newspaper reporter and a freelance writer.   She also worked in Penn State University’s Public Information Office for several years, covering medical research and other topics.

Diane Dorman

Vice President for Public Policy at NORD

Washington D.C.office

Diane leads NORD efforts in its relationship with the federal government and Congress. She is the primary DC representative for more than 30 million Americans who have one of the 7,000 known rare diseases. Her overriding mission is to improve the plight of patients with rare diseases and increase incentives for the development of orphan drugs, devices, and diagnostics. Ms. Dorman’s advocacy has been instrumental in the passage of three new public laws and she has been influential in the adoption of numerous programs, regulations and guidances.

Marsha Lanes., M.S., C.G.C.

Genetic Counselor/Medical Editor at NORD

Danbury, CT office

Marsha received her bachelor’s degree in biology from Bucknell University and her master’s degree in human genetics and genetic counseling from the University of Pittsburgh Graduate School of Public Health.  A Board-certified genetic counselor and member of the National Society of Genetic Counselors, she held positions with Tufts-New England Medical Center,  Boston University, the Massachusetts Department of Public Health and the Prenatal Diagnostic Center before joining NORD in 2002.

Stefanie Putkowski, RN, BSN

NORD’s Research Grant Program Administrator

Danbury, CT office

Stefanie is a graduate of Columbia University. She has held nursing positions in hospitals, home care, and private physician settings, and was an oncology nurse clinician for an NIH-funded grant at Mount Sinai Hospital in NYC.  Stefanie is also NORD’s Research Grant Program Administrator.  Prior to joining NORD in 2006, Stefanie worked in a busy primary care office. “I received my most important clinical experience related to rare disorders in that primary care office, as I witnessed — first-hand — the perseverance one often needs to obtain an accurate diagnosis of a rare disease.”

Tai Spargo, MPA

Assistant Director of Communications at NORD

Danbury, CT office

Tai’s main responsibilities include organizing and overseeing the annual Rare Disease Day activities, serving as the team leader for NORD’s social media team, contributing to the communications department activities related to RareConnect, and website content development for NORD’s website. She received an undergraduate degree in interdisciplinary studies: Communications, Legal Institutions, Economics and Government and a Masters in Public Administration from American University.

Paul Bruno

IT Manager

Danbury, CT office

Jason Barron

Associate Director of Public Policy for NORD

Washington D.C.office

Jason’s focuses include legislative and regulatory policies, government affairs, and Federal advocacy.  He joined the NORD team two years ago after receiving an undergraduate degree in Chemistry from Dartmouth College.  While a student, Jason worked as a laboratory assistant for nearly two years in the Department of Genetics at the Geisel School of Medicine.  He also served as intern and as a junior legislative correspondent to Rep. Patrick Kennedy, former Congressman for the 2^nd District of Rhode Island.  Current policy focuses include the implementation of the Affordable Care Act, the FDA Safety & Innovation Act, and advocacy for rare diseases research.

Alexandra Freitas

Online Communities Coordinator for NORD

Danbury, CT office

Alexandra serves as the Online Communities Coordinator for NORD. She is responsible for managing the online communities project, RareConnect, and implementing NORD’s social media presence. Alexandra attended the University of Connecticut, Storrs, and graduated Magna Cum Laude from Western Connecticut State University.