Introducing new Community of Interest leadership

4 Dec 2025

New Co-Leads have been appointed to the GA4GH-INCF Neuroscience and GA4GH Rare Disease Communities of Interest to advance responsible data sharing within specific genomic and health domains.

GA4GH is pleased to announce the appointment of several community members into new leadership roles. Please join us in welcoming Neuroscience Community Co-Lead Kelly Shen (Simon Fraser University), and Rare Disease Community Co-Leads Toyofumi Fujiwara (Database Center for Life Science, Research Organization of Information and Systems), Ada Hamosh (Johns Hopkins University of Medicine), and Andra Waagmeester (Amsterdam UMC).

Each GA4GH Community of Interest acts as a forum for people in domain-specific research and healthcare professions to discuss GA4GH product application within their fields. Members of Communities of Interest apply GA4GH products in real-world use cases to demonstrate their impact in advancing research and improving human health outcomes.

The Neuroscience Community was established in 2023 as a joint collaboration between GA4GH, the International Neuroinformatics Coordinating Facility (INCF), and the Brain Research International Data Governance & Exchange (BRIDGE) project. Shen now joins Francis Jeanson (Ontario Brain Institute) as Co-Lead of the Neuroscience Community. Together, they will guide the community in establishing harmonised neuroscience data standards, governance frameworks, and educational resources that facilitate data sharing for international, collaborative neuroscience research.

The GA4GH Rare Disease (RD) Community provides a forum for researchers, clinicians, and technical rare disease experts to collaborate on the implementation and promotion of global health data standards that advance rare disease research in line with FAIR (Findable, Accessible, Interoperable, and Re-usable) principles. Fujiwara, Hamosh, and Waagmeester join current RD Community Co-Lead, Nicole Vasilevsky (Critical Path Institute), to guide the group’s efforts. The RD Community is working to develop guidance resources and use cases that support widespread health data sharing to accelerate rare disease diagnosis, discovery, and personalised care.

	Kelly Shen is the Director of Operations at Simon Fraser University’s Institute for Neuroscience and Neurotechnology where she leads the development of neuroinformatics platforms, services, and training. Her work focuses on advancing open and reproducible research across experimental and computational neuroscience domains. As the Co-Lead of the GA4GH Neuroscience Community, she is committed to developing standards that reduce barriers to the responsible use of neuroscience data across systems and communities. “Creating global neuroscience standards requires intentionally inclusive practices. I’m excited to contribute to the GA4GH Neuroscience Community’s development of interoperable and equitable standards that enable participation from researchers worldwide.” — Kelly Shen
	Toyofumi Fujiwara is an Associate Professor at the Database Center for Life Science (DBCLS), Research Organization of Information and Systems (ROIS) in Japan. His work focuses on improving rare disease diagnosis by integrating clinical phenotypes, genomic data, and structured biomedical knowledge, with an emphasis on developing FAIR and internationally interoperable data resources. He has contributed to international data-sharing efforts through Matchmaker Exchange, a GA4GH Driver Project, and applies GA4GH standards and tools within Japan to improve the structure, quality, and usability of national rare disease data. His activities align closely with the GA4GH mission to advance responsible, globally connected data sharing for rare diseases. “I am honoured to serve as a Co-Lead of the GA4GH Rare Disease Community. I look forward to working with colleagues around the world to strengthen interoperability and advance responsible data sharing that accelerates diagnosis and improves outcomes for people living with rare diseases.” — Toyofumi Fujiwara
	Ada Hamosh MD, MPH is the Dr. Frank V. Sutland Professor of Genetics at the Johns Hopkins University School of Medicine and has served as the Director of Online Mendelian Genetics in Man (OMIM®) since 2002. A clinical and biochemical geneticist, she has worked in the field of rare disease for 35 years, including with the ClinGen Project, Mondo, Human Genome Organisation (HUGO) — as its President from Spring 2023 to 2025 — and GA4GH since its inception. She and colleagues developed PhenoDB, as well as GeneMatcher, which is a founding member of the Matchmaker Exchange (MME). Hamosh serves on the steering committee of the MME and represents it on the Product Steering Committee of GA4GH. “I am delighted to work with the GA4GH Rare Disease Community, and bring a clinical perspective to product development and implementation. I hope that clinicians from around the world join our effort to develop standards and tools that are easy to implement to accelerate diagnosis and treatment. By doing so, we can work to ensure that data sharing facilitates maximum impact for people living with rare diseases.”   — Ada Hamosh
	Andra Waagmeester is an assistant professor in the Reusable Health Group of the Department of Medical Informatics at Amsterdam UMC in the Netherlands and founder of Micelio, a Belgian consultancy focused on linked data solutions for biomedicine and related fields. A FAIR data expert and long-time user of Wikidata as a linked data infrastructure, his research interests centre on data standardisation for interoperability among diverse datasets, particularly in the context of rare diseases. Waagmeester co-leads the GA4GH Rare Disease Community, aligning his work with GA4GH’s mission to improve data sharing and collaboration in rare disease research. “I am excited to collaborate globally to find remedies for rare diseases by aligning datasets across languages and regions. I hope to bridge technical and data solutions with people by making user stories and competency questions at the forefront of the quest for interoperability of health data. By doing this, we can move towards finding treatment for rare diseases.” — Andra Waagmeester