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 🙂