OHSU Rare Disease Research Consortium Symposium 2015: Difference between revisions

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{{Template:OHSU Rare Disease Research Consortium Symposium 2015}}
{{Template:OHSU Rare Disease Research Consortium Symposium 2015}}
==General Info==
==General Info==
[http://www.brownpapertickets.com/event/1319831 Registration]
[http://www.brownpapertickets.com/event/1319831 Register for the conference]


== Schedule ==
== Schedule ==
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|--
|--
| 4:00-5:00
| 4:00-5:00
| [http://www.kathiresanlab.org/about-sek/ Sekar Kathiresan, M.D.]
| [http://www.kathiresanlab.org/about-sek/ Sekar Kathiresan, M.D.], Director of preventive cardiology, Mass General Hospital
| Leveraging human knockouts to understand risk for and protection from disease
| Leveraging human knockouts to understand risk for and protection from disease
|--
|--
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|--
|--
| 6:20 to 6:30
| 6:20 to 6:30
| Laura Hays, Ph.D., Executive Director, Fanconi Anemia Research Fund  
| Laura Hays, Ph.D., Executive Director, [http://fanconi.org Fanconi Anemia Research Fund]
| Making a difference: the David Frohnmayer advocacy formula
| Making a difference: the David Frohnmayer advocacy formula
|--  
|--  
| 6:30 to 6:35
| 6:30 to 6:35
| Maureen Hoatlin
| [https://www.linkedin.com/in/hoatlin Maureen Hoatlin, Ph.D.,MBA], co-chair OHSU Rare Disease Research Consortium
| OHSU Rare Disease Consortium overview and objective of the symposium
| OHSU Rare Disease Consortium overview and objective of the symposium


|--
|--
| 6:35 to 6:45
| 6:35 to 6:45
| Eric Orwoll, M.D.
| [http://www.ohsu.edu/xd/research/research-expertise/researchers/?personid=586 Eric Orwoll, M.D.]
| Osteogenesis imperfecta: a brittle bone disease with well-definedmolecular pathologies but limited clinical insights and therapies
| Osteogenesis imperfecta: a brittle bone disease with well-defined molecular pathologies but limited clinical insights and therapies
|--
|--
| 6:45 to 6:55
| 6:45 to 6:55
| David Sprio, M.D.
| David Sprio, M.D., Co-founder and Chief Medical Officer, [http://reeldx.com ReelDx]
| A novel Real patient video platform that enables patients and clinicians to share rare disease phenotypes
| A novel real patient video platform that enables patients and clinicians to share rare disease phenotypes
|--
|--
| 6:55 to 7:05  
| 6:55 to 7:05  
| Evan Shereck, M.D.
| [http://www.ohsu.edu/xd/health/services/providers/index.cfm?personID=2057 Evan Shereck, M.D.]
| Overview of the program in Pediatric Immunodeficiency Rare Disease Research Clinical Network
| Overview of the program in Pediatric Immunodeficiency Rare Disease Research Clinical Network
|--
|--
|7:05 to 7:10
|7:05 to 7:10
| Markus Grompe, M.D.
| [http://www.ohsu.edu/xd/research/centers-institutes/stem-cell-center/faculty/markus-grompe.cfm Markus Grompe, M.D.]
| Program in Fanconi anemia
| Program in Fanconi anemia
|--
|--
| 7:10 to 7:20
| 7:10 to 7:20
| Cary O. Harding, M.D.
| [http://www.ohsu.edu/xd/education/schools/school-of-medicine/departments/basic-science-departments/molecular-and-medical-genetics/people/primary-faculty/cary-harding.cfm Cary Harding, M.D.]
| Clinical Trials in inborn errrors of amino acid and fatty acid metabolism
| Clinical Trials in inborn errrors of amino acid and fatty acid metabolism
|--
|--
| 7:20 to 7:40
| 7:20 to 7:40
| David Ellison, M.D.
| [http://www.ohsu.edu/xd/health/services/providers/?personid=201 David Ellison, M.D.]
|  
|  
:Part 1: All about that Bass: rare gene mutations and human blood pressure variation.  
:Part 1: All about that Bass: rare gene mutations and human blood pressure variation.  
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|--
|--
| 7:40 to 8:20  
| 7:40 to 8:20  
| Xiaobing Quan, M.D., Ph.D
| Xiaobing Quan, M.D., Ph.D, Executive Director, Translational Medicine at [http://www.regeneron.com Regeneron Pharmaceuticals, Inc.]
| Accelerating opportunities from discovery to clinic in rare disease research
| Accelerating opportunities from discovery to clinic in rare disease research
|--
|--
|8:20 to 8:25
|8:20 to 8:25
|Maureen Hoatlin
|[https://www.linkedin.com/in/hoatlin Maureen Hoatlin, Ph.D, MBA]
|Final Remarks, Action items, organizing for the future
|Final Remarks, Action items, organizing for the future
|--
|--

Revision as of 21:33, 30 March 2015

Equipped with his five senses, man explores the universe around him and calls the adventure Science. ~Edwin Powell Hubble, The Nature of Science, 1954


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

General Info

Register for the conference

Schedule

Time Presenter Title
3:30 pm Registration
4:00-5:00 Sekar Kathiresan, M.D., Director of preventive cardiology, Mass General Hospital Leveraging human knockouts to understand risk for and protection from disease
5:00 to 6:10 Poster session and reception
6:10 to 6:20 Mary Stenzel-Poore, Ph.D., Senior Associate Dean for Research, School of Medicine Introduction
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, co-chair OHSU Rare Disease Research Consortium OHSU Rare Disease Consortium overview and objective of the symposium
6:35 to 6:45 Eric Orwoll, M.D. 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., Co-founder and Chief Medical Officer, ReelDx 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. Overview of the program in Pediatric Immunodeficiency Rare Disease Research Clinical Network
7:05 to 7:10 Markus Grompe, M.D. Program in Fanconi anemia
7:10 to 7:20 Cary Harding, M.D. Clinical Trials in inborn errrors of amino acid and fatty acid metabolism
7:20 to 7:40 David Ellison, M.D.
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, Action items, organizing for the future
8:25 to 8:30 iPad Giveaway