Rare Disease Watch is a news and information resource dedicated to making complex scientific, clinical, and regulatory developments clear, accessible, and trustworthy. The rare disease landscape changes quickly, with new research findings, treatment approvals, policy shifts, and and funding updates. Our mission is to provide accurate, concise reporting that helps professionals, families, advocates, and researchers stay informed about what is changing and why it matters.
We are committed to translating complicated information into clear, meaningful insights without losing scientific rigour. Our aim is simple: to ensure the global rare disease community has reliable, timely access to knowledge that supports informed decisions, advances advocacy, and deepens understanding of this fast moving field.
We track and analyse the latest research publications, clinical trial activity, treatment advances, regulatory decisions, funding developments, and global policy from trusted sources. Alongside this, we publish in-depth explainers, context pieces, and practical resources that unpack complex topics across science, healthcare systems, and lived experience. Our coverage is distilled into clear, accurate summaries that explain why developments matter and how they affect the rare disease community.
Our editorial approach focuses on clarity, balance, and context. We extract key insights from technical documents, simplify complex data, and present it in a way that remains faithful to the science while being accessible to all readers.
Our Medical and Rare Disease Council helps ensure our reporting remains scientifically sound, balanced, and relevant. Their clinical, research, and regulatory expertise strengthens every aspect of our coverage.
We aim to serve a diverse audience including clinicians, researchers, industry professionals, patient organisations, families, and individuals living with rare conditions. Our reporting bridges the gap between technical literature and everyday understanding.
Rare Disease Watch was co founded by Simeon Cohen and his sister Dr Shara Cohen, both of whom have previously served as chairs and board members of rare disease charities. Their combined backgrounds span lived experience, biomedical science, science communication, and long standing engagement with rare disease communities.
Simeon is the father of a child with a rare disease and brings a grounded understanding of the challenges families face when trying to access reliable information. His lived experience navigating complex medical pathways, evolving treatments, and uncertainty revealed a clear need for a trustworthy source of daily updates. Simeon contributes strategic insight, clarity, and a deep understanding of the practical realities affecting families across the rare disease world.
Shara is a biomedical scientist with decades of experience in research, science communication, and public education. She has dedicated her career to making complex scientific and clinical information understandable, accurate, and accessible. Her background in publishing, communication, and community support forms the editorial backbone of Rare Disease Watch and ensures consistent, rigorous reporting.
Together, they founded Rare Disease Watch to fill a crucial gap: the need for dependable, daily rare disease updates presented with clarity, accuracy, and compassion.
Rare Disease Watch is supported by a growing network of medical advisors, subject specialists, and trained authors.
Our team is united by a shared belief that accurate information empowers better decisions, stronger advocacy, and improved understanding across the rare disease world.
