Dr Shara Cohen is Founder and Executive Chair of Rare Disease Watch. A biomedical scientist and science communicator, she has extensive experience in research, public education and knowledge translation. Her work focuses on making complex scientific and clinical information accurate, accessible and genuinely useful for healthcare professionals, researchers, patients and the wider public.
She co-founded Rare Disease Watch to provide clear, reliable reporting on research developments, regulatory decisions, treatment advances and funding changes across the rare disease landscape. Working alongside the organisation's Co-CEOs, she provides strategic leadership, overseeing the long-term vision, scientific direction and growth of the organisation while ensuring its commitment to accuracy, independence and evidence-based reporting.
In addition to Rare Disease Watch, Shara is Founder and Executive Chair of Cancer Care Parcel and the Women in STEM Network. Throughout her career, she has founded multiple organisations spanning science, healthcare and professional development, including an international scientific conference company that she successfully built and exited.
With more than three decades of experience in biomedical science, scientific publishing, conferences and community building, Shara has dedicated her career to translating complex science into trusted, accessible information that empowers people to make informed decisions.
Across all her work, she is committed to scientific integrity, clarity and institutional responsibility in how knowledge is created, interpreted and shared.
Dr Shara Cohen is Founder and Executive Chair of Rare Disease Watch. A biomedical scientist and science communicator, she has extensive experience in research, public education and knowledge translation. Her work focuses on making complex scientific and clinical information accurate, accessible and genuinely useful for healthcare professionals, researchers, patients and the wider public.
She co-founded Rare Disease Watch to provide clear, reliable reporting on research developments, regulatory decisions, treatment advances and funding changes across the rare disease landscape. Working alongside the organisation's Co-CEOs, she provides strategic leadership, overseeing the long-term vision, scientific direction and growth of the organisation while ensuring its commitment to accuracy, independence and evidence-based reporting.
In addition to Rare Disease Watch, Shara is Founder and Executive Chair of Cancer Care Parcel and the Women in STEM Network. Throughout her career, she has founded multiple organisations spanning science, healthcare and professional development, including an international scientific conference company that she successfully built and exited.
With more than three decades of experience in biomedical science, scientific publishing, conferences and community building, Shara has dedicated her career to translating complex science into trusted, accessible information that empowers people to make informed decisions.
Across all her work, she is committed to scientific integrity, clarity and institutional responsibility in how knowledge is created, interpreted and shared.
Simeon Cohen is Co-Founder of Rare Disease Watch. As the father of a child living with a rare disease, his family's journey through complex diagnoses, evolving treatment options and fragmented medical information inspired the creation of the platform. His lived experience has provided first-hand insight into the challenges patients and families face when searching for accurate, reliable and understandable information.
With more than 25 years' experience leading technology resilience in large-scale financial and highly regulated environments, Simeon has developed expertise in systems thinking, risk management and information reliability. As Head of Technology Resilience at a global banking institution, his work focuses on ensuring critical systems remain secure, resilient and dependable.
Simeon's personal experience, combined with his professional background, helped shape the vision for Rare Disease Watch. His perspective reinforced the importance of creating a trusted platform where patients, families, healthcare professionals and researchers can access clear, evidence-based information without unnecessary complexity.
Across his career, Simeon has been committed to improving the reliability, accessibility and usability of information, applying the same principles that underpin resilient technology systems to the challenge of navigating rare diseases.
Malvika Mathur is a healthcare and life sciences strategist with expertise in real-world evidence, market access, competitive intelligence, and AI-driven health technology. She has led go-to-market strategies, built strategic partnerships, and driven commercial growth across the UK, EU, and global markets at the intersection of data, innovation, and patient impact. As CEO of Rare Disease Watch, she is committed to advancing rare disease awareness and improving health literacy by translating complex scientific and health data into clear, accessible, and patient-centred insights. Her vision is to bridge the gap between scientific innovation and public understanding, empowering communities to navigate healthcare information with confidence and clarity.
Koshir Kassie is a strategic, people-first CEO focused on turning ambitious ideas into scalable, real-world impact. With a disciplined approach to growth and a strong bias for execution, he operates at the intersection of innovation, strategy, and mission-led communication. He is known for cutting through complexity, setting clear direction, and aligning teams around meaningful, evidence-informed objectives.
Through Rare Disease Watch, Koshir is helping to build a trusted platform focused on improving awareness and understanding of rare diseases, patient experiences, and emerging healthcare challenges. His leadership is centred on delivering clear, reliable, and accessible information while creating long-term value through collaboration, continuous improvement, and sustainable growth.
Michelle Mucha is a global pharmaceutical strategy leader with more than 25 years of experience spanning R&D, pharmacovigilance, regulatory affairs, and enterprise operations. She has advised C‑suite and senior executives across Bristol Myers Squibb, Janssen R&D, Johnson & Johnson, Ascendis Pharma, and other biotech innovators driving organizational transformation, portfolio governance, and large‑scale operating model redesign.
Michelle has led major enterprise initiatives including global PV expansion, integrated medical writing operations, leadership model transformation, and the largest portfolio prioritization effort in BMS history. Her career includes extensive contributions to clinical development across oncology, hematology, neurology, dermatology, and women’s health, supporting multiple INDs, BLAs, and global trial execution.
As a Global Advisory Board Member for Rare Disease Watch, Michelle brings deep sector insight, strategic foresight, and a commitment to advancing solutions for patients and families navigating rare conditions worldwide.
