Expert Advisory Group
The international expert group consists of specialists, researchers and clinicians who possess in-depth knowledge and experience in the rare disease field. Their main objective is to provide guidance and expertise to inform decision-making processes, research priorities, and policy development.
By harnessing the collective expertise of this advisory group, we can enhance the capacity at RAiN to address the complex issues surrounding rare diseases, ultimately leading to improved outcomes for patients worldwide.
International Expert Advisory Group
The international expert advisory group facilitates collaboration and knowledge exchange among different countries, fostering the sharing of best practices, resources, and research findings.
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Dr Marshall Summar
Director, Rare Disease Institute Laboratory, Children’s National, Washington D.C., USA.
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Dr Lina Jankauskaite
Head of Coordinating Centre for Rare and Undiagnosed Diseases, Lithuanian University of Health Sciences Kauno Klinikos, Lithuania.
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Professor Martin Persson
Professor of Health Sciences, Kristianstad University, Sweden. Co-chair of the European Cleft and Craniofacial Initiative for Equality in Care (ECCE).
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Dr PJ Brooks
Acting Director of the Rare Diseases Research Innovation at the National Centre for Advancing Translational Sciences (NCAT), USA.
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Dr Valerie Boebel Toly
Associate Professor of Nursing, Case Western Reserve University, Cleveland, Ohio, USA.
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Dr Jerry Vockley
Director of the Centre for Rare Disease Therapy and Chief of the Medical Genetics division, Professor of Paediatrics and Professor of Human Genetics, University of Pittsburgh, Pennsylvania, USA.