Dr Shara Cohen is co founder of Rare Disease Watch, bringing more than two decades of experience in immunology, stem cell research, and scientific publishing to a platform focused on improving how rare disease information is interpreted and understood.

Her work centres on translating complex scientific and clinical evidence into clear, accurate reporting that supports families, clinicians, and decision makers navigating uncertainty. As editorial lead, she sets an evidence informed direction that places scientific rigor alongside lived experience, without oversimplification or false reassurance.

Through Rare Disease Watch, she is building a trusted framework for rare disease communication that strengthens visibility, improves recognition within healthcare systems, and supports more informed engagement with research, policy, and care pathways.