The submission portal for speakers is now closed. However, there are still opportunities to participate in our poster session.
Academics, researchers, industry, government agencies, health care professionals, patient organizations and any other interested parties that have conducted rare disease or orphan product research studies or public health projects are invited to submit a poster abstract.
Deadline: Poster abstract must be received by May 1, 2020
Notification of selected abstracts: June 5, 2020
Themes: The four (4) themes listed below are the suggested specific topic areas within which the planning committee would like to see posters focus. Please use these as a guide as you develop your poster abstract. You will be asked to identify which theme your poster addresses during the submission process.
Abstracts may cover any type of research conducted including — clinical, patient-focused, innovation (technological or otherwise), or economic and policy research as it relates to health and social issues. Also included in this theme are collaborative initiatives and centers of excellence that involve ground-breaking strategies or projects that could be useful to other groups, organizations, patients, government, academics or professionals in the rare disease and orphan product community.
Abstracts should cover public health awareness and education of healthcare professionals (HCPs); information exchange or training that leads to advancements in diagnosis; or advancements and innovative models in medical education training.
Abstracts in this theme should cover topics such as advancements in patient education; novel ways to increase engagement in the rare disease community; or successful models in increasing patient advocacy and awareness by leveraging technology and social media.
These abstracts should still relate to the overall topic of rare diseases and orphan products, but do not fit within the themes previously listed.
For additional information, including eligibility details, please view the poster guidelines.
 Amanda Aikulola President Dysautonomia Support Network |  Aishwarya Arjunan Clinical Product Specialist Myriad Women’s Health |  Chris Austin MD Director, National Center for Advancing Translational Sciences (NCATS) National Institutes of Health (NIH) |
 Erica Barnes Minnesota Rare Action Network® Ambassador NORD |  Terry Jo V. Bichell, MPH, PhD Tennessee Rare Action Network® Ambassador NORD |  Lara Bloom Executive Director, International The Ehlers-Danlos Society |
 John Boyle President and CEO Immune Deficiency Foundation |  Patrick Collins Senior Director, Global Healthcare Policy and External Affairs CSL Behring |  Marie Conley Founder The Conley Cushing’s Disease Fund and Interim Chairman, PA Rare Disease Advocacy Council |
 Joslyn Crowe Executive Director National Neimann-Pick Disease Foundation | Elizabeth Dannenberg Patient |  Debbie Drell Director of Membership NORD |
 Eric Dube President and Chief Executive Officer Retrophin |  Tim Ehrhard Director of Information Technology NORD |  Natacha Esber |
 Deborah Fowler (Settig) President and Founder Soft Bones |  Jennifer Fox Cohead, Health Care Investment Banking Citibank |  Beverley Francis-Gibson MA President and Chief Executive Officer Sickle Cell Disease Association of America |
 Jim Geraghty formerly Third Rock Ventures | Susan Gregurick, PhD Associate Director for Data Science National Institute of General Medical Sciences, NIH |  Scott Gottlieb, MD American Enterprise Institute |
| Stefan Gross, PhD Director, Enzymology Agios Pharmaceuticals | Moira A. Gunn, PhD Associate Professor University of San Francisco | Patricia Jones, DrPH Program Director NCATS, NIH |
| Linda Hageman, RN Executive Director American Multiple Endocrine Neoplasia | John Hopper President / Executive Director Fibrolamellar Cancer Foundation |  Neil Horikoshi CEO and Executive Director Aplastic Anemia and MDS International Foundation (AAMDSIF) |
 Philip Katz Partner Hogan Lovells US LLP | Lucas Kempf, MD Associate Director, Rare Diseases Program, CDER, Office of New Drugs FDA | Andrei Kindzelski, MD, PhD Program Director National Heart, Lung and Blood Institute, NIH |
 Sharon King NC Advisory Council |  Camilla Krogh Lauritzen LEO Pharma A/S | Steven Lemery, MD Associate Deputy Director Division of Oncology Products, FDA |
| Nick Leschly Chief bluebird bluebird bio |  Will Lewis President and Chief Executive Officer Insmed |  Peter Marks, MD, PhD Director, Center for Biologics Evaluation and Research (CBER) Food and Drug Administration (FDA) |
 Janet Maynard, MD, MHS Director, Office of Orphan Products Development FDA |  Pooja Merchant Head, Patient Partnerships and Engagement Oncology Global Medical Affairs Bayer Pharmaceuticals |  Kelly Mercier, PhD Director of Medical and Scientific Affairs Inivata Limited |
| Theresa Mullin Associate Director for Strategic Initiatives CDER, FDA |  Francois Nader, MD, MBA Chairman Acceleron Pharma |  Gina Parziale |
 Tai Pasquini |  Steven D. Pearson, MD, MSc Founder and President Institute for Clinical and Economic Review (ICER) | Vasum Peiris, MD Chief Medical Officer Pediatrics and Special Populations, Center for Devices and Radiological Health (CDRH), FDA |
 Denise Perry Associate Director Clinical Laboratory, Illumina |  Karen Pignet-Aiach Founder, Chief Executive Officer and Board of Directors Chairperson Lysogene |  Wayne Pines President, Health Care APCO Worldwide |
 Amy Price Rarallel, LLC | Tejashri Purohit-Sheth, MD Director Division of Clinical Evaluation and Pharmacology Toxicology (DCEPT), CBER, FDA |  Debra Regier MD, PhD Children’s National Medical Center |
| Lora Reineck, MD Program Director National Heart, Lung and Blood Institute, NIH |  John Reynders Vice President, R&D Strategy, Program Management and Data Sciences Alexion |  Jack Rollins Senior Policy Analyst National Association of Medicaid Directors |
 Dawn Rotellini Senior Vice President, Program Development National Hemophilia Foundation |  Mark Rothera President and CEO Orchard Therapeutics |  Peter L. Saltonstall President and Chief Executive Officer NORD |
| Bhaskar Sambasivan President, Patient Services and Chief Strategy Officer Eversana |  Nina Schor, MD Deputy Director NINDS, NIH |  Geetha Senthil, PhD Health Scientist Administrator Office of Genomic Research Coordination, NIH |
| Patricia Seymour CCRC, MA, CIP |  Michael Sherman Chief Medical Officer Harvard Pilgrim |  Norman E. “Ned” Sharpless, MD Acting Commissioner FDA |
 David Scheer President Scheer & Company, Inc. | Jeffrey Shuren, MD, JD Director Center for Devices and Radiological Health, FDA |  Oodaye Shukla Chief Data and Analytics Officer HVH Precision Analytics |
 Eric Sid, MD Presidential Management Fellow NIH | Christine Simmon Senior Vice President, Policy and Strategic Alliances Executive Director Biosimilars Council, Association for Accessible Medicines |  Lisa Sniderman King, MSc, CGC Interim Head, Medical Diagnostics and Strategic Partnerships Sanofi Genzyme |
| Susan Spinosa Patient | Peter Stein, MD Director Office of New Drugs, CDER, FDA |  Kristin Stephenson Chief Policy and Community Engagement Officer Muscular Dystrophy Association |
 Holly Tabor Associate Professor of Medicine Stanford University Medical Center |  Kalahn Taylor-Clark, PhD, MPH Global Head, Patient Solutions Sanofi Medical | John F. Tisdale, MD Senior Investigator National Heart, Lung and Blood Institute, NIH |
| R. Nolan Townsend Regional President, North America Rare Disease Business Pfizer |  Stephanie Uder Vice President Product Management Accredo Specialty Pharmacy |  Jodie Vento Chair, NSGC Access and Services Committee Children's Hospital Pittsburgh |
 Janet Woodcock, MD Director, Center for Devices and Radiological Health FDA |  Brad Wong President and Chief Executive Officer Pulmonary Hypertension Association | Neil Versel Board Member Multiple System Atrophy Coalition |
 Benjamin Yerxa, PhD Chief Executive Officer Foundation for Fighting Blindness |
