Board of Directors

Erik Tambuyzer,
PhD – Chair

Dr. Tambuyzer has been an innovator in medical products development since the early 80’s. In 1985, he co-founded and managed Innogenetics NV/SA, a biotechnology company later acquired by Solvay Pharma, subsequently acquired by Abbott, and now part of Fujirebio. In 1992, he joined Genzyme Corp. as its Vice-President Europe, Diagnostics and Genetics. From 1996, as Genzyme’s Senior Vice-President, Corporate Affairs Europe, Dr. Tambuyzer was the industry point person in the discussions with the European Commission and the Parliament on the European Orphan Medicinal Products Regulation. Erik was a founding Board member and Vice-Chairman of EPPOSI, the European Platform for Patients’ Organizations, Science & Industry. He was a founding Board member and Chair of EuropaBio, the European Association of Bioindustries and set up and chaired their Ethics Working Group and Rare Diseases and Orphan Drugs Task Force (across industry associations, with EFPIA and EuropaBio); he received the first EuropaBio Award of Merit in 2011. Untill early 2015, Dr. Tambuyzer has been the Chairman of the Center for Medical Innovation (CMI), a non-profit foundation of Flanders, Belgium, working on translational biomedical research and biobanking with all universities and university hospitals of the region, and with industry. He is a member of the Belgian national advisory committee on rare diseases and orphan drugs, a Fund within the King Baudouin Foundation which he co-founded in 2006. He is also a Member of the Royal Flemish Academy of Belgium for Science and Arts (2006-now), for which he organized a symposium entitled Innovative Entrepreneurship via Spin-offs of Knowledge centres.

Marlene Haffner,
MD, MPH – Vice Chair

MARLENE E. HAFFNER, MD, MPH is  the CEO of Haffner Associates, LLC a firm dedicated to the strategy, development and policy of drug development with a special emphasis on rare diseases and the products that treatment them.  For 20 years, Dr. Haffner served as Director of the Office of Orphan Products Development (OOPD) of the Food and Drug Administration (FDA). As OOPD Director she was responsible for the leadership and management of the FDA orphan products development program, the first Orphan Products program in the world.  In addition to her FDA responsibilities, Dr. Haffner was instrumental in the development of Orphan Drug programs in the EU, Japan, Australia. In addition to her work at FDA, Dr. Haffner was also employed for two years by Amgen, the largest biotech company in the world. Her responsibilities there were as Executive Director, Global Regulatory Intelligence and Policy

For 36 years she served in the United States Public Health Service. Dr Haffner received her MD from the George Washington University School of Medicine and her MPH from the Johns Hopkins University Bloomberg School of Public Health. During her Public Health career, she rose to the rank of Rear Admiral in the USPHS.

Susan R. Kahn

Ms. Kahn is Executive Director of National Tay-Sachs & Allied Diseases Association.  Prior to joining NTSAD in 2008, she was Senior Director, Business Development, for Genzyme Genetics where she was responsible for strategy development, new product assessment, and technology licensing.  Prior to Genzyme, Ms Kahn worked in various business development, finance and general management roles at Chiron Diagnostics (now part of Siemens).  For the past 15 years, she has held leadership positions and has worked on project teams for Community Consulting Teams, an organization made up of MBA alumni who provide volunteer consulting services for non-profit organizations in the Boston area.  Sue has an MBA from the Amos Tuck School of Business Administration and an A.B. degree in applied mathematics–economics from Brown University.

Warren Strittmatter, MD

Dr. Strittmatter retired in 2014 as Professor and Chief, Division of Neurology, Department of Medicine at Duke University School of Medicine. At Duke he also served as Chief, Pediatric Neurology and Professor in Neurobiology. He received his medical degree and neurology training at Duke University. He worked at the NIH from 1977 to 1979 before returning to Duke. Dr. Strittmatter has been a critical opinion leader in the clinical research for treatments for Alzheimers and rare neurodegenerative diseases, named by ISI as  “Top 20 Scientists in Neuroscience and Behavior” 1992-2002. He leads on the Board in all aspects of neurological rare disease drug discovery.

Jean-Jacques Cassiman, M.D.

Dr. Cassiman brings a career commitment to patients with rare diseases, as a pediatric geneticist and advocate for the welfare of children and adults living with the burden of these disorders worldwide. Today, Dr. Cassiman is emeritus Human Genetics Professor KU Leuven and has previously served as secretary-general and president of the European Society of Human Genetics, liaison to the International Federation of Human Genetics Societies, secretary of EPPOSI, Vice-President of the Institute for Science and Technological aspects of the Flemish Parliament, and Vice-President of the Belgian Cystic fibrosis Society. He is Chair of the Fund for Rare Diseases and Orphan Drugs of the King Baudouin Foundation and a member of the Rare Disease Patient and Ethics Council (RD-PEC) and President of the board of the Flemish League against Cancer (VLK) and member of the Federal Commission on Embryo research. In addition, he was coordinator of a number of EU projects on Cystic Fibrosis and of the EU-funded Network of Excellence EUROGENTEST (2005-2010), which aimed at harmonizing and improving the quality of genetic testing in the EU.

Dr. Cassiman has been the recipient of high scholarly honors; in 1998 he held the Francqui chair at the Catholic University of Louvain, he was conferred Doctor Honoris Causa in 2002 of the University of Medicine and Pharmacy of Cluj Napoca (Romania), in 2003 of the Catholic University Santiago de Guayaquil, Ecuador and in 2013 of the University of Hasselt, Belgium.

Christian Policard, PhD

Dr. Policard, a Docteur in Biochemistry, has traversed the spectrum of scientific and business leadership in the biomedical and biopharmaceutical arena. He has been the Executive Vice President, Diagnostics, the Executive Vice President Agro-Veterinary, the US Territory Manager and in charge of The New Activities (Corporate Venture) at SANOFI-SYNTHELABO and from 1988 a member of its Worldwide Executive Committee. He was later, from 2000 to 2005 the Executive Vice President Business Development of INSTITUT PASTEUR (a charity employing 10.000 people worldwide in more than 30 countries).

Dr. Policard has been a board member of many biotech and pharmaceutical companies in US, UK, Ireland,Belgium, Holland, Israël; and presently holds board seats at Sepal, the Association Technion France, France Biotech and The Foundation for The Universite De Technologie De Compiegene.

He is since January 2002 one of the three Founders and a Senior Partner of “BIOTECH DEVELOPPEMENT CONSEILS” based in PARIS, TEL AVIV, Lausanne, TOKYO and SINGAPORE; and involved in capital fund-raising for biotechnology companies, consulting for Capital Funds, strategy, business development and mergers/acquisitions support as well as consulting around pre-litigation settlements (intellectual property, R&D and distribution agreements).

Susan Hayflick, M.D.

Susan Hayflick, M.D., a medical and molecular geneticist, has dedicated her career to helping people affected by rare neurological diseases. As a physician and scientist, she works to improve lives every day while advancing therapeutics discovery and development. Sparked by early work with a small group of families in the Amish community, her primary focus has been on a group of ultra-rare conditions known as Neurodegeneration with Brain Iron Accumulation (NBIA), a term Hayflick coined. Her impact on this field extends from disease gene discovery to disease model development, from clinical trial readiness to advancing therapeutics. Through worldwide collaborations, her sustained efforts are leading to the first attempts to develop potential therapies for two NBIA disorders. Dr. Hayflick demonstrates her commitment to patients as a catalyst for the founding of the oldest and largest NBIA patient organization, established in 1994. Working closely with families and caring for their affected children, is a constant source of inspiration and conviction to advance treatments: “It feels like pressure,” Hayflick says. “It’s hard to go to family meetings every two years and not have a cure. That feels like failure.”

Susan Hayflick took her MD at the Pennsylvania State University College of Medicine and completed a postdoctoral fellowship in medical genetics at the Center for Medical Genetics at Johns Hopkins Hospital. Joining Oregon Health & Science University in 1993, Dr. Hayflick is a professor of Molecular & Medical Genetics, Pediatrics, and Neurology at OHSU and is chair for the Department of Molecular & Medical Genetics. She also serves as Director of the OHSU Human Genetics Initiative and co-chairs OHSU’s Rare Disease Research Consortium.

Howard Liebman

Howard Liebman is a Partner with the international law firm of Jones Day in its Brussels, Belgium office. He focuses on international tax and corporate structuring, coordinating both the corporate and tax sides of transnational M&A, joint ventures and restructuring transactions. He also advises on cross-border labor law, IP, data protection, and licensing issues.

Howard is currently the President of the American Chamber of Commerce in Belgium, after having chaired its Legal & Taxation Committee for 12 years and in this capacity takes a leading role in commenting on public policy issues of concern for U.S. industry to government officials in Belgium in particular and the EU in general.

Howard is the coauthor of the BNA Portfolio (No. 999 – 2nd) on “Doing Business in the European Union” and has chaired and spoken at many seminars on both EU corporate law and international tax law issues. He frequently publishes academic articles in various U.S. and European journals.

Howard took his an A.B. in International Relations and Economics at Colgate University, and an A.M. in International Relations and his J.D. from Harvard Law School.

Special Advisors

Yann Le Cam
– Special Advisor to the Board

Yann Le Cam served as Vice Chairman of the Committee for Orphan Medicinal Products (COMP) at the European Drug Agency (EMA). As one of its first patient representative members, and working with the European Commission, he was instrumental in helping to design and in advocating many of the strategic initiatives related to rare diseases in Europe and internationally. Yann also served on the Management Board and Executive Committee of the French Health Technology Assessment agency and on the DIA Advisory Committee Europe. He was Vice Chairman of the EU Committee of Experts on Rare Diseases (EUCERD), and is nominated to the current European Commission Experts Group on Rare Diseases. Yann Le Cam is elected Chair of the Therapies Scientific Committee of the IRDiRC – the International Rare Diseases Research Consortium (www.irdirc.org).