MIHRA Founding Board of Directors
The founding team of dedicated experts in myositis-related conditions working hard for worldwide collaboration to cure myositis diseases together.
Barbara Shafranski
Patient Research Partner
Legal & Organizational Advisor
New Jersey, USA
Elie Naddaf
Neurology
Mayo Clinic
Rochester, MN, USA
Floranne Ernste
Rheumatology
Mayo Clinic
Rochester, MN, USA
Helene Alexanderson
Physical Therapy
Karolinksa Institutet, Stockholm, Sweden
Julie Paik
Rheumatology
Johns Hopkins University
Baltimore, MD, USA
Mazen Dimachkie
Neurology
University of Kansas
Kansas City, KS, USA
Lesley Ann Saketkoo
Adult & Pediatric Rheumatology/ Pulmonary Focus
LSU & Tulane University
New Orleans, Louisiana, USA
Pedro Machado
Rheumatology/Neurology Focus
University College London
London, United Kingdom
MIHRA Patient Advisory Board
The MIHRA Patient Advisory Board is comprised of a group of dedicated patient/supporter experts that are recognized peer leaders, advocates, research partners in myositis-related diseases. These advisors are integral to operations and strategic planning of MIHRA as experts representing the various diseases of myositis and who are highly interactive within the international patient community, they bring to MIHRA the many patient voices of the patients and families they represent. Worldwide collaboration with patient experts and the general patient community across these rare diseases is the essential light to illuminating paths to cure myositis diseases together.
Anneli Dihkan
Swedish Myositis Society, European Neuro Muscular Centre (ENMC) Sweden
Barbara Shafranski
MIHRA Board Member, Treasurer
New Jersey, USA
Christine Lowe
Myositis Australia Australia
Ingrid de Groot
The Myositis Association, Dutch Myositis Society, European Neuro Muscular Ctr, European (Rare Disease) Reference Network (ERN), Social Worker
Irene Oakley
Myositis UK, Founder Parent of child with Juvenile Myositis
Joe Sanchez
Exercise in IBM ‘Influencer’
Texas, USA
Karen Cheng
European (Rare Diseases) Reference Network (ERN) iMyos Board Member Basel, Switzerland
Roland Mischke
German Myositis Group Germany
Silke Schlüter
iMyos Board Member, European (Rare Diseases) Reference Network (ERN), German Myositis Group, Chair, Myositis NETZ, Board Member
Suzanne Edison
Cure JM, Psychologist, Parent of child with DM California, USA
MIHRA Scientific Advisory
Annet van Royen
Pediatric Rheumatologist University Medical Center – Utrecht Netherland
Bianca Lang
Pediatric Rheumatologist Dalhousie University, Canada
Chester Oddis
Adult Rheumatologist University of Pittsburgh, USA
David Isenberg
Adult Rheumatologist University College London, UK
Frederick W. Miller
Adult Rheumatologist, National Institutes of Health, USA
Ingrid Lundberg
Adult Rheumatologist Karolinska Institutet, Sweden
JIri Vencovsky
Adult Rheumatologist Institute of Rheumatology, Czech Republic
Kristin Highland
Adult Pulmonologist & Rheumatologist Cleveland Clinic, USA
Lisa Christopher-Stine
Adult Rheumatologist, Johns Hopkins University, USA
Marianne de Visser
Adult Neurologist University Medical Center – Amsterdam, Netherlands
Masataka Kuwana
Adult Rheumatologist/ Immunologist Nippon Medical University, Tokyo, Japan
Victoria Werth
Adult Dermatologist University of Pennsylvania, USA
Program Team Leaders
The team of dedicated experts in myositis-related conditions driving the programs for worldwide collaboration to cure myositis diseases together.
Alejandro Benitez
Rheumatology
Universidad de Buenos Aires
Buenos Aires, Argentina
Antonia Valenzuela
Rheumatology
Pontificia Universidad Católica de Chile
Santiago, Chile
Christian Lood
Translational Science
University of Washington
Seattle, Washington, USA
Christopher Mecoli
Rheumatology
Johns Hopkins University
Baltimore, Maryland, USA
Didem Saygin
Rheumatology
Rush University Medical Center Chicago, Illinois, USA
Jemima Albayda
Rheumatology
Johns Hopkins University
Baltimore, Maryland, USA
Jessica Day
Rheumatology
Walter & Eliza Hall Institute for Medical Research
Melbourne, Australia
Latika Gupta
Rheumatology
Royal Wolverhampton Hospitals NHS
University of Manchester
Manchester, England, UK
Malin Regardt
Occupational Therapy
Karolinska Institutet
Stockholm, Sweden
Pari Basharat
Rheumatology
Western University
London, Ontario, Canada
MIHRA Internal Advisory Board
Web listing in progress 🙂