Road to a Cure

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2016 Conference

2016 Conference

PSC Partners Seeking a Cure’s 12th annual conference for PSC patients and caregivers was held in New Haven, Connecticut from June 24-26, 2016  at the Omni New Haven in conjunction with the Yale Liver Center and Yale School of Medicine.  For the 1st time the conference was held back to back with the first U.S. meeting of the International PSC Study Group (IPSCSG). The IPSCSG is a group of the top PSC researchers and hepatologists from 17 countries, whose aim is to coordinate PSC research projects between leading institutions worldwide. Members of this group gave presentations to our attendees on Saturday and Sunday.

Quick Links
Conference agenda
Detailed speaker biographies
Friday Breakout Sessions
Saturday General Sessions (with video)
Sunday Joint Session with IPSCSG

Thank you to Dr. James Boyer, Dr. Mario Strazzabosco, Dr. Tom Karlsen and Dr. David Assis and their colleagues for providing the excellent speakers who broadened our perspectives and understanding of PSC. Our special thanks to the Yale Liver Center and Yale School of Medicine, the IPSCSG and our Long Term Premier Partner Illinois Tool Works. We are also indebted to all our conference sponsors.  We thank all the members of our community who generously donated their time and funds to the PSC Partners Seeking a Cure organization.

Photograph acknowledgements to Karen Pearlman, K Pearlman Photography Kpearlman

Thursday June 23

Casual Get Together/Dinner @ Fornarelli’s Ristorante

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Friday June 24

Brunch at Anthony’s Ocean View

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Friday Afternoon Breakout Sessions
David Assis Intro to PSC A to Z (2MB)
Brett Fortune The Use of Liver Transplantation in PSC: What to Know and Recent Updates (1MB)
Udeme Ekong Pediatric PSC Medical Issues (1MB)
Cindy Dunn Interactive Session: T’ai Chi Chih
Jeffrey Weinreb, Veeral Oza Intervention in PSC: Perspectives from Radiology and ERCP Providers (25MB)
Sylvia Lempit How to Find a Doctor and an Advocate and Navigate the Healthcare System (704KB)
Myron Brand IBD and PSC (5MB)
Dwain Fehon PSC Patients: Coping with the Stress of Living with PSC (4MB)
Jeremy Burke Disability Benefits: What to Expect When You Can No Longer Work (900KB)
James Boyer Interpreting Your Test Results (11MB)
Cary A. Caldwell Medical Management Following Liver Transplant (10MB)
Manuel Rodriguez-Davalos, Karan Emerick Navigating Pediatric PSC: A Surgeon’s Perspective
Carol Eggers Interactive Session: Mindfulness (410KB)
John Wysolmerski Maintaining Bone Health in PSC (11MB)
Tamar Taddei PSC and Cholangiocarcinoma: Certainties, Uncertainties, and Future Directions (4MB)
David Assis How to Decide if a Clinical Trial is Right for Me? (346KB)
Anne Marie Rivard, Lyle Hawes The Importance of Good Nutrition and Exercise in PSC
Nutrition (2MB)     Exercise (2MB)
Dwain Fehon Caregivers: Coping with the Stress of Living with PSC (4.1MB)
Jeremy Burke FMLA: Understanding your rights under the Family Medical Leave Act
Welcome Dinner & Improv Performance

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Saturday June 25

General Session 1 Understanding PSC
Moderator Keith Lindor, MD
Cyriel Y. Ponsioen,
MD, PhD
New Insights into the Natural History of PSC
Watch Video    Download (8.77 MB)
John Eaton,
MD
Environmental Risk Factors and Primary Sclerosing Cholangitis
Watch Video    Download  (20.4 MB)
Tom Karlsen,
MD, PhD
PSC and Genetic Factors
Watch Video    Download (10.1 MB)
Lindor,
Ponsioen,
Eaton,
Karlsen
Question and Answer – Panel Discussion
Watch Video
General Session 2 Managing PSC
Moderators Christoph Schramm, MD and Kidist Yimam, MD
Gideon
Hirschfield, MD
Looking After Patients with PSC: The Big Picture Approach
Watch Video    Download (11.7 MB)
Olivier
Chazouilleres, MD
Non-Invasive Assesment of PSC Progression
Watch Video    Download (2.7 MB)
Mark Topazian, MD Endoscopic Management of PSC: Is ERCP Helpful?
Watch Video    Download  (10.1 MB)
Schramm, Yimam,
Hirschfield,
Chazouilleres,
Topazian
Question and Answer – Panel Discussion
Watch Video
General Sessions 3-4 : PSC and the Future
Moderators David Goldberg, MD and Cynthia Levy, MD
Bertus Eksteen,
MD, PhD
Concepts and Key Issues Specific to PSC Transplant Assessment and Planning
Watch Video    Download (1.3 MB)
David Mulligan,
MD
New Paradigms for Transplant Surgery in PSC: MELD and Living Donor Considerations
Watch Video    Download (41.7 MB)
Christopher Bowlus,
MD
Seeking Treatments for PSC – Out of the Desert and into the Woods
Watch Video    Download  (9.6 MB)
Ulrich Beuers,
MD
Future Directions in PSC Research
Watch Video    Download  (7.4 MB)
Goldberg, Levy
Eksteen, Mulligan
Bowlus, Beuers
Question and Answer – Panel Discussion
Watch Video
Banquet Dinner Theme International Costumes

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Karaoke!

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Sunday June 26

Joint Plenary Session with IPSCSG: Surrogate and Patient Reported Outcomes in PSC

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Moderators Erik Schrumpf, MD, PhD and Roger Chapman, BSc, MBBS, MD, FRCP, MA
Christopher
Bowlus, MD
Patient Registries – Collaboration, Competition, or Confusion?
Download (396 KB)
Cyriel Ponsioen, MD, PhD Defining Surrogate Outcomes for PSC
Download (3.9 MB)
David Assis, MD Defining Value Based and Patient-Reported Outcomes in PSC
Download (1.0 MB)
Schrumpf, Chapman,
Bowlus, Ponsioen, Assis
Question and Answer
Panel Discussion
Ricky Safer, CEO
PSC Partners Seeking A Cure
Physician/Patient Future Collaboration Opportunities
Download (1.3 MB)
Thanks to all that made the 2016 Conference a huge success!

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2017 Annual Conference

We are pleased to announce that PSC Partners Seeking a Cure’s 13th annual conference for PSC patients and caregivers will take place in Cleveland, Ohio from June 23-25, 2017. The conference will be held in partnership with the Cleveland Clinic Transplant Center, at the Intercontinental Hotel, on the grounds of the Cleveland Clinic main campus.  Check back at pscpartners.org for more details!