Sanford/PPALS PACT 2023 Faculty
Our faculty is comprised of well-respected and recognized individuals who are considered experts in their respective fields. They bring a wealth of knowledge to each of their lectures based on their experiences.
Jean is a co-founder and board member of the Professional Patient Advocates in Life Sciences (PPALS), a member of the Rare Collective and an Erdheim-Chester Disease Global Alliance Board Member. Jean also serves on MedunikCanada’s Advisory Board, Exceptional Parent Editorial Board, Sanford CoRDS’ External Advisory Board, National Caregiving Council Advisory Board, and Atlantic Research Group’s Scientific Advisory Board. Jean has served as a grant reviewer for Global Genes’ Innovation Grants, the United Way of Western Connecticut and the City of Danbury, CT. Somehow she manages to find time to spend with her two granddaughters, Madeline and Juliette, her daughters and son-in-law, Meredith and Aaron and Liz, family, and friends. Rumor has it that she attends ballroom dance classes and is an avid movie-goer!
I have over 30 years of experience in various industries with a Master’s Degree in Business (Finance). I joined Daiichi Sankyo in 2018 as Sr. Director of Global Advocacy in Global Medical Affairs and have been involved with all early and late stage assets for the organization.
EveryLife Foundation for Rare Diseases, she develops and executes nationwide strategies that inspire rare disease patients and caregivers to engage in advocacy to make their voices heard.
Prior to joining the Everylife Foundation, Britta served in leadership roles in government, including Deputy Chief of Staff for the Governor of Maryland, Director of Partnerships and Program Development for the Maryland Department of Labor, and Chief of Staff for the Prince George’s County Economic Development Corporation. She is a long-time advocate on behalf of the lymphedema community, earning the Outstanding Advocacy Award from the Lymphatic
Education & Research Network. For the last eight years, Britta has shared “advice, comfort, and positive thinking” on her blog, lymphedemadiary.com. She holds a Master of Public
Administration from Pace University. Britta lives in Arlington, Virginia with her husband and two very spoiled cats.
Dr. Eckstein received a B.S. in zoology and a B.A. in anthropology from the University of Maryland, College Park, and a Ph.D. in cell biology/
Dr. Eckstein is passionate about serving the research community, especially the rare disease community. Throughout his career he has served on many trans-NIH work groups, including several neurological and neuromuscular disease work groups. He has worked closely with patient groups, bringing them together with the relevant researchers, NIH program staff and industry partners to help move rare disease research forward collaboratively. His efforts in this area continue as he works to bring together local and regional academic research institutions and the NIH Clinical Center to help facilitate clinical research and training across area partners.
As the principal and founder of Engage Health, Patti brings extensive experience in strategic planning, caregiver/patient identification and mapping, market research, market valuation, clinical trial recruitment, risk management and managed distribution for orphan drugs and specialty medical products. Patti also has significant experience in policy / governmental affairs and was creator of the Rare Disease Difference Maker™ project, which recognizes individuals who have made a difference in the rare disease space.
A frequent presenter on complex issues related to commercializing therapies for rare diseases, Patti led marketing and sales at Orphan Medical, Inc., and spent more than a decade in various sales and marketing management roles at 3M Pharmaceuticals. She has served as a member of the National Organization for Rare Disorder’s Corporate Council Advisory Group and Global Genes’ Corporate Alliance and sat on the advisory board for Raptor Pharmaceuticals and Kakkis EveryLife Foundation.
Patti is an R.N. with a background in pediatric oncology nursing and earned her Bachelor of Science in nursing and Bachelor of Arts in sociology from the College of St. Catherine, St. Paul, Minnesota.
In February of 2019, Jayne received the second annual “Heart of BioNJ” Award in honor of her selflessness and dedication to patients in the rare disease community, and her renown role as a trailblazer in Patient Advocacy. She is a 2018 PharmaVOICE 100 honoree, recognized for providing inspiration and innovation in the life sciences industry. She is a member of the Boards of Trustees of BioNJ and of the Healthcare Institute of New Jersey and is a co-founder and vice chair of the board of Professional Patient Advocates in Life Sciences (PPALS). Jayne is the former executive director of National Tay-Sachs & Allied Diseases Association.
A native of Medford, Massachusetts, Jayne graduated from Syracuse University with a dual degree in Newspaper Journalism and English Literature and studied marketing management at Radcliffe College. She and her husband, Bruce, reside in Lambertville, NJ; they have two adult children.
In addition to her consulting activities Marlene is Adjunct Professor, Department of Preventive Medicine and Biometrics, and Clinical Professor, Department of Medicine, at the F. Edward Hébert School of Medicine, Uniformed Services University of the Health Sciences (USUHS) in Bethesda, Maryland. A sought after speaker and consultant, Dr. Haffner has received many awards for her work in drug development including The Outstanding Contributions to Pharmaceutical Medicine Award from the American Academy of Pharmaceutical Physicians, and the Woodrow Wilson Award for Outstanding Government Service from the Johns Hopkins University. She is the author of multiple articles in peer reviewed literature concerning issues of orphan product development.
advocacy from many perspectives. She has been actively involved in many national organizations as a board member, an advisor and a leader at NORD, Global Genes, Child Neurology Foundation, WE MOVE , and the Best Pharmaceutical for Children's Act committee. She has been a consultant to the pharmaceutical industry for over 20 years but most importantly, she was the mother of a child with a devastating undiagnosed neurological disorder. Nancy brings a unique combination of empowerment and empathy to her work with patients, their families and caregivers, and the scientific communities. Her goals range from creating awareness and education, to assisting patient support programs and promoting the overall strategy to offer the best possible patient care. Nancy resides in California where she is a peer counselor, working with people in all areas of transition.
David has extensive experience assisting corporate and nonprofit executives with strategy, performance coaching, and refining business operations. Since 1999, he has been working with rare disease communities ranging from individual disease groups to national associations and pharmaceutical companies.
David received his MBA in Management and Marketing from the Columbia University School of Business. Prior to his MBA, he graduated from the Katholieke Universiteit te Leuven (STB, MA & PhD cand.), Belgium, and was formerly a priest. In addition to living in Belgium for four years, he has lived, studied and worked in England, German, Italy, Jamaica, Massachusetts, Rhode Island, Spain, and Tanzania. Before joining VCG in 1991, David was the Administrator for the Department of Surgery, Memorial Sloan Kettering Cancer Center. He also taught at Boston and Providence Colleges, wrote a newspaper column in Rhode Island, and spent over thirty years working with community-based health care organizations caring for terminal patients.
Mr. Lapidus’s analyses have been used to support successful M&A activity in the orphan drug field. In addition, established orphan drug companies with marketed products use LapidusData market forecasting systems for sales, marketing, and budgetary planning.
Before founding LapidusData in 2008, Mr. Lapidus began his pharma career at Decision Resources, a pharmaceutical consulting firm. After contributing several innovations to this company’s forecasting process, he moved to Genzyme, where he built a market forecasting system for the enzyme replacement therapy business unit. Mr. Lapidus holds a BA in Social Studies from Harvard University.
He became the second Executive Director of Uplifting Athletes at the end of 2018. Prior to taking over as the Executive Director, Rob served as Uplifting Athletes' Director of Rare Disease Engagement for nearly two years.
Olivia’s empowerment of others has been recognized by the Association for Women in Science and PharmaVoice 100. She is an active co-author to many chapters in the Society for Clinical Data Management’s Good Clinical Data Management Practices document and is a certified Clinical Data Manager.
Nita has completed midwifery training in London, UK; received Genetic Nurse Certification, Obstetric Nurse certification and Clinical Research certification.
Understand Epidermolysis Bullosa from patient perspective: Bruckner A1, Murrell D2, Wisk J3, Losow M3, Patel N3, Reha A3, Lagast H3, Gault J4, Cantor E3, Gershkowitz J3
The Patient and Clinician Point of View: Living With Late-onset Pompe Disease: Patel N,1 Kishnani P,2 Sathe S,1 Dietze D,3 Jain V,1 Viereck C,1 Barth JA,1 Sitaraman S1
Regulatory strategies for rare diseases under current global regulatory statutes: a discussion with stakeholders
Andrew E. Mulberg; Christina Bucci-Rechtweg; Joseph Giuliano; David Jacoby; Franklin K. Johnson; Qing Liu; Deborah Marsden; Scott McGoohan; Robert Nelson; Nita Patel; Klaus Romero; Vikram Sinha; Sheela Sitaraman; John Spaltro; Vivian Kessler
Orphanet Journal of Rare Diseases
Dr. Pearce has been researching Neuronal Ceroid Lipofuscinosis (Batten disease) since 1997. His research has led to the first clinical trial for Juvenile Batten disease. He has published over 100 research papers on Batten disease. He also oversees a national registry for rare diseases known as the Coordination of Rare Diseases at Sanford (CoRDS). He has served on numerous NIH review committees, has organized rare disease workshops for the National Institute for Neurological Disorders and Stroke (NINDS) arm of the National Institutes of Health (NIH) and is currently the chair of the consortium assembly for the International Rare Diseases Research Consortium (IRDiRC).
As President of Innovation, Research, & World Clinic at Sanford, he oversees the development of research programs, including more than 450 researchers, eight research centers and more than 300 ongoing clinical trials.
Jamie holds a B.A. in Sociology from Union College, Schenectady, NY and a M.P.H. in Social & Behavioral Sciences from Boston University. Jamie serves on the Board of Directors for the National Tay Sachs and Allied Diseases Association and is on the advisory board for the BU School of Public Health Pharmaceutical Certificate Program.
Rob’s extensive experience and style of writing on rare diseases and disorders assures that both individuals and physicians are provided a clear understanding of rare diseases. During his tenure as the Managing Editor at the National Organization for Rare Disorders (NORD), Rob oversaw the development and expansion of the NORD Rare Disease Database as well as interacted with rare disease experts to ensure that each report was medically peer reviewed. His understanding of the unique needs of the rare disease community serves as the impetus to foster better communication and understanding between these diverse groups and the industry representatives that work with them.
Rob has worked for several years with JF Campbell Consultants to help facilitate the relationship between patient communities and pharmaceutical companies and provide guidance to these organizations on a wide variety of educational and business activities.
Rob has helped to mentor fledging nonprofit patient advocacy organizations, oversee grants programs, and written news articles that have appeared in magazines or websites including Exceptional Parent magazine and WebMD. Rob has also worked as an editorial consultant at the Leukemia & Lymphoma Society and currently serves as Managing Editor to RareShare, a rare disease community run by Rare Genomics.