April 7, 2015, from 4-8:30 pm at OHSU in the Joseph Vey Conference Center
- 11th Floor, Doernbecher Children’s Hospital
- 700 SW Campus Drive
- Portland, OR 97239
Thank you all for your incredible interest in rare disease research.
The OHSU Rare Disease Research Symposium 2015 brought together more than 200 participants including a selection of OHSU's top scientists to showcase our portfolio of rare disease research in “speed talks” plus a poster session/reception, along with a thought-provoking keynote address and special guest lectures.
Video Recording, Pictures and Further Information about the Symposium
- Recording of the Symposium use schedule listed below to locate presentations of interest.
- Photos of the Symposium
- More info on the OHSU Rare Disease Consortium
- Contact person Maureen Hoatlin, Ph.D.,MBA (hoatlinm AT OHSU.edu)
- Adding info frequently
- Speaker Bios, cheatsheets and background reading for the conference.
- A big Thank You for the support of this conference goes to
- The OHSU School of Medicine for a Collaborative Grant
- The OHSU Biochemistry and Molecular Biology Department
- OHSU Technology Transfer and Business Development
- OCTRI, the Oregon Clinical and Translational Research Institute
- OHSU Dean's Office, Communications.
Individual Thanks for Planning Help
- Valerie Scott, Biochemistry and Molecular Biology
- Caroline Amling, Gerri Lutes OHSU Events
- Rachel Shafer, OHSU Communications
- Jackie Wirz, Ph.D.
- Abby Dotson
The Rare Disease Research Steering Committee: co-chairs Maureen Hoatlin & Susan Hayflick, Jit Banerjee, Maria Fleseriu, Bobby Heagerty, Penny Hogarth, Jonathan Lindner, Mark Pennisi, Sue Richards, Bob Steiner, Julie Earnest, Leila Schwanemann and Brittany Sale.
| 3:30 pm
|| Registration opens (posters can be put up starting at 3pm)
|| Sekar Kathiresan, M.D., Associate Professor of Medicine,Harvard Medical School, Director of preventive cardiology at Massachusetts General Hospital
|| Leveraging human knockouts to understand risk for and protection from disease
| 5:00 to 6:10
|| Poster session and reception
|| 21 posters including a summary of the OHSU Rare Disease Consortium, plus a poster in remembrance of David Frohnmayer where you will be able to share your memories of this extraordinary champion of rare disease research.
| 6:10 to 6:20
|| Mary Stenzel-Poore, Ph.D.Senior Associate Dean for Research, OHSU School of Medicine
|| Introduction to the conference
| 6:20 to 6:30
|| Laura Hays, Ph.D., Executive Director, Fanconi Anemia Research Fund
|| Making a difference: the David Frohnmayer advocacy formula
| 6:30 to 6:35
|| Maureen Hoatlin, Ph.D.,MBA, Associate Professor Biochemistry and Molecular Biology, co-chair OHSU Rare Disease Research Consortium
|| OHSU Rare Disease Consortium overview and objectives of the symposium
| 6:35 to 6:45
|| Eric Orwoll, M.D.., Professor of Medicine, Brittle Bone Disorder Rare Disease Research Clinical Network
|| Osteogenesis imperfecta: a brittle bone disease with well-defined molecular pathologies but limited clinical insights and therapies
| 6:45 to 6:55
|| David Sprio, M.D., Chief Medical Officer and Co-founder, ReelDx, Associate Professor of Pediatrics, OHSU
|| A novel real patient video platform that enables patients and clinicians to share rare disease phenotypes
| 6:55 to 7:05
|| Evan Shereck, M.D., Associate Professor of Pediatrics
|| Overview of the program in Primary Immune Deficiency Treatment Consortium (PIDTC)
|7:05 to 7:10
|| Markus Grompe, M.D., Fanconi anemia Program Project P.I., Professor, Departments of Pediatrics and Molecular and Medical Genetics, Director, Papé Family Pediatric Research Institute
|| Program in Fanconi anemia
| 7:10 to 7:20
|| Cary Harding, M.D., Professor of Molecular and Medical Genetics and Pediatrics
|| Clinical trials in inborn errrors of amino acid and fatty acid metabolism
| 7:20 to 7:40
|| David Ellison, M.D.,Professor of Medicine and Physiology & Pharmacology, Director of the Oregon Clinical and Translational Research Institute at OHSU
- Part 1: All about that Bass: rare gene mutations and human blood pressure variation.
- Part 2: How OCTRI can help rare disease research at OHSU
| 7:40 to 8:20
|| Xiaobing Quan, M.D., Ph.D., Executive Director, Translational Medicine at Regeneron Pharmaceuticals, Inc.
|| Accelerating opportunities from discovery to clinic in rare disease research
|8:20 to 8:25
||Maureen Hoatlin, Ph.D, MBA
||Final remarks, organizing for the future
|8:25 to 8:30
||Trish Pruis, Ph.D.
||iPad Giveaway, random drawing of names of conference participants (must be present to win!)