Support PBC Research: What to do after #RAREDISEASEDAY

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Pbc

Rare Disease Day, celebrated across social media and IRL on the last day of the shortest month of the year, is a growing global movement, shining a light on the thousands of conditions cumulatively affecting tens of millions of people.

Primary biliary cholangitis (PBC) is one of those rare diseases. PBC, a chronic, progressive, autoimmune liver disease that disproportionately affects women in their childbearing years can lead to inflammation of the small bile ducts leading into the liver and may ultimately cause such scarring, cirrhosis, that liver transplantation is the only option. There are few medications available to treat PBC.

For those wondering what to do the next 364 days of the year until the next Rare Disease Day, consider participating in a clinical trial. An essential theme for 2018’s Rare Disease Day is “Patient Involvement is the Key to Effective Research for Rare Diseases”. There could not be a truer statement. More and more patients are participating in breakthrough sponsor led clinical research studies to help find effective treatments for PBC and other rare liver diseases.  Patients who have not experienced an adequate response with Ursodeoxycholic Acid (UDCA or Urso) have a unique opportunity to participate in an actively enrolling clinical study, being conducted by Genfit.  If you and your clinician agree that you have not responded adequately to Urso, then you may want to consider participating in this study of the drug, Elafibranor, and its effects on PBC while being taken in combination with Urso.

Patient participation in clinical trials by working with sponsors like Genfit, and experienced clinical research doctors is key to gaining new knowledge of PBC, and ultimately has the potential of bringing in new effective treatments for PBC. 

Do You Have Pbc
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One action you can take today

If you are or know of an adult in the US, UK, Germany, Spain, or France, who has been diagnosed with PBC and who has not responded to Ursodeoxycholic Acid (UDCA or Urso) contact one of the sites listed below for more information on this ongoing clinical research study.

For more information, contact Atif Mohammad at Atif.Mohammad@genfit.com

Participating Locations

United States, Arizona

Mayo Clinic in Arizona
Recruiting
Phoenix, AZ 85054
Contact: Elizabeth J. Carey, MD    480-342-2000   

United States, Georgia

Piedmont Hospital
Recruiting
Atlanta, GA 30309
Contact: Dr. Sheela Reddy    404-605-4168 

United States, Florida

Schiff Center for Liver Diseases
Recruiting
Miami, FL 33136
Contact: Cynthia Levy, MD    305-243-4615   

Cleveland Clinic
Recruiting Soon
Weston, FL 33331
Contact: Dr. Bobby Zervos     954-659-5888 

United States, Massachusetts

Massachusetts General Hospital
Recruiting
Boston, MA 02114
Contact: Daniel Pratt, MD    617-724-3836      

Beth Israel Deaconess Medical Center
Recruiting
Boston, MA 02215
Contact: Alan Bonder, MD    617-632-1086    

United States, North Carolina

Asheville Gastroenterology
Recruiting
Asheville, NC 28801
Contact: Dr. Adam Zivony   828-350-3671

United States, Virginia

University of Virginia
Recruiting
Charlottesville, VA 22908
Contact: Stephen H. Caldwell, MD    434-924-2626

Virginia Commonwealth University
Recruiting
Richmond, VA 23298
Contact: Velimir Luketic, MD    804-828-4060    

Germany

Clinic for Gastroenterology and Hepatology
Recruiting
Köln, Germany, 50937
Contact: Münevver Demir, MD    +49 (0)2214 787334      

Johannes Gutenberg University
Recruiting
Mainz, Germany, 55131
Contact: Jorn M Schattenberg, MD    +49 (0)6131 176831      

Goethe University Hospital
Recruiting Soon
Frankfurt, Germany
Contact: Tania Welzel, MD

United States, New York

Northwell Health – Sandra Atlas Bass Center for Liver Disease
Recruiting
Manhasset, NY 11030
Contact: Henry C. Bodenheimer, MD    516-562-4664     

United States, Texas

University of Texas Southwestern Medical Center
Recruiting
Dallas, TX 75390
Contact: Marlyn Mayo, MD    214-648-2725

Baylor College of Medicine – Advanced Liver Therapies
Recruiting
Houston, TX 77030
Contact: John M. Vierling, MD    832-355-8966

United States, Washington

Swedish Organ Transplant and Liver Center
Recruiting
Seattle, WA 98104
Contact: Kris Kowdley, MD    206-386-3880      

France

Hôpital Saint-Antoine
Recruiting Soon
Paris, France 75012
Contact: Olivier Chazouilleres, MD   1.49.28.23.78 

Spain

Hospital de la Santa Creu i Sant Pau
Recruiting
Barcelona, Spain, 08025
Contact: Adolfo Gallego Moya, MD    +34 932 919-000      

Liver Unit, University of Barcelona
Recruiting
Barcelona, Spain, 08036
Contact: Albert Pares, MD    +34 932 275-753      

United Kingdom

Queen Elizabeth Hospital
Recruiting
Birmingham, United Kingdom, B15 2GW
Contact: Gideon Hirschfield, MD    +44 (0)121 415-8700      

Addenbrooke’s Hospital
Recruiting
Cambridge, United Kingdom, CB2 0QQ
Contact: George Mells, MD    +44 (0)122 324-5151      

The Royal Liverpool University Hospital
Recruiting
Liverpool, United Kingdom, L7 8XP
Contact: Imran Patanwala, MD    +44 (0)151 706-2000      

Institute of Liver Studies, King’s College Hospital
Recruiting
London, United Kingdom, SE5 9RS
Contact: Michael Heneghan, MD    +44 (0)203 299-7615      

Royal Victoria Infirmary
Recruiting
Newcastle upon Tyne, United Kingdom, NE1 4LP
Contact: David Jones, MD    +44 (0)191 222-8335      

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