Meet The Team

Our Board

Rare Disease Watch was co founded by Dr Shara Cohen and her brother Simeon Cohen, who share a lifelong commitment to improving access to clear, reliable information for the rare disease community. Both have previously served as chairs and board members of rare disease charities, giving them direct insight into the challenges that individuals, families, and professionals face when trying to keep up with rapidly changing research and treatment landscapes.
Simeon Cohen

Simeon Cohen

Simeon Cohen is a senior technology and resilience leader and the father of a child living with a rare disease. His personal experience navigating complex diagnoses, evolving treatment options, and fragmented medical information has given him a first-hand understanding of the challenges families face when trying to stay informed and make decisions under uncertainty.

With more than 25 years’ experience in large-scale financial and regulated environments, Simeon brings deep expertise in systems thinking, risk management, and information reliability. As Head of Technology Resilience at a global banking institution, his work centres on continuity, accuracy, and ensuring critical systems remain dependable under pressure.

At Rare Disease Watch, Simeon ensures the platform remains grounded in real-world needs, with a strong focus on clarity, relevance, and practical usefulness. He plays a key role in shaping how information is structured, prioritised, and communicated so that families, clinicians, and professionals can access trustworthy insights without unnecessary complexity.

Across his work, Simeon is committed to making the information he once struggled to find easier to access for others, combining lived experience with rigorous standards of reliability and accountability.
Shara Cohen

Dr Shara Cohen

Dr Shara Cohen is a biomedical scientist and science communicator with 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 professional, patient, and public audiences.

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. The platform is designed to support informed decision-making by clinicians, researchers, patients, and families navigating fast-moving and often fragmented information.

In parallel, she leads initiatives in healthcare and workforce development, including Cancer Care Parcel and the Women in STEM Network, applying the same systems-led approach to improving access to information, support, and long-term outcomes.

Across all her work, Shara is committed to clarity, accuracy, and institutional responsibility in how knowledge is created, interpreted, and shared.

Meet the CEOs

Rare Disease Watch is led operationally by two Chief Executive Officers who are responsible for the execution, growth, and day-to-day management of the platform. Working in close partnership with the founders, they oversee content production, partnerships, platform development, and commercial sustainability.

The CEOs ensure that Rare Disease Watch delivers on its mission to provide clear, reliable, and accessible information to the global rare disease community, while maintaining high standards of accuracy, governance, and impact.
Malvika Mathur

Malvika Mathur

United Kingdom
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

Koshir Kassie

United Kingdom
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.

Meet the Volunteers

Rare Disease Watch is supported by a growing team of medical advisors, researchers, science communicators, and specialist authors who help ensure that our reporting remains accurate, balanced, and genuinely useful for the global rare disease community.
Karan Kanhai

Dr Karan Kanhai, MD, PhD

Medical and Rare Disease Councillor
Spain
Karan Kanhai, MD, PhD is a global medical affairs and clinical development leader with over 20 years’ experience across oncology, haematology, and rare disease. A UK-registered physician, he has led international medical strategy, clinical programmes, and product launches, working across Europe, the US, and Asia-Pacific. His expertise spans clinical trial design, regulatory strategy, and market access, with a strong focus on translating scientific innovation into meaningful patient impact, particularly for underserved communities.

DR FAIZA SYEDA

Staff Author
United Kingdom
Faiza Syeda is a medical doctor with clinical experience across a range of medical roles and a strong grounding in patient care, medical records, and evidence-based practice. She also holds advanced certification in clinical research, clinical data management, and pharmacovigilance.

She is passionate about promoting public health and rare diseases, and enjoys turning medical knowledge into practical, accessible insights. She is also interested in medical research, and how it can help improve health and understanding of diseases. As a contributor to Rare Disease Watch, Faiza brings a clinically informed perspective, with a focus on accuracy, patient-centred insight, and clear communication of medical evidence. Her work aims to improve health literacy, support informed decision-making, and help readers navigate complex health topics with confidence and awareness.
Faiza Syeda
Dr Deborah Udaw

DR DEBORAH UDAW

Staff Author
Nigeria
Deborah Udaw is a health writer with an interest in rare diseases and public health awareness. She contributes to Rare Disease Watch by exploring underreported conditions, diagnostic challenges, and the importance of accessible, evidence-informed health communication. Her work is driven by a commitment to clarity, responsible reporting, and increasing understanding of complex health issues.
Karan Kanhai

YUSTIKARINI

Staff Author
Indonesia
Yustikarini is a linguistics graduate and experienced translator and content writer. With a background in linguistics, she brings strong analytical skills her written content. Her work spans technical documentation and SEO-optimised web articles. At Rare Disease Watch, she contributes to making accurate scientific and health information accessible to a global readership through precise, thoughtful writing.

OLUWOLE JACOB

Staff Author
Malaysia
Oluwole Jacob is a researcher with a background in pure and applied zoology and holds a BSc in Biology from the Federal University of Agriculture Abeokuta (FUNAAB). His work includes contributing to the Happy City Index through analysis of urban wellbeing indicators, supporting evidence-informed reporting and policy insight.

He also holds a Higher National Certificate in Cyber Security. As a contributor to Rare Disease Watch, Oluwole applies a rigorous, analytical approach to research and clear, accurate science communication.
Oluwole Jacob
Muhammad Abdullah

DR MUHAMMAD ABDULLAH

Staff Author
Pakistan
Muhammad Abdullah is a Doctor of Pharmacy with expertise in pharmacology and clinical pharmacy. He has a strong grounding in evidence based medicine, therapeutic management, and patient centered care. He has experience in interpreting and communicating complex pharmacological data, linking clinical insight with practical application in healthcare settings.

In addition to his clinical background, Muhammad is an experienced direct response copywriter, applying principles of clear, purposeful communication to health and medical content. As a contributor to Rare Disease Watch, he integrates pharmacological expertise with precise, research informed writing to enhance understanding of rare diseases, treatment pathways, and emerging therapeutic developments. His work supports the platform’s commitment to accuracy, transparency, and advancing awareness through evidence based communication.
Mikaiah Oyepintemi

MIKAIAH OYEPINTEMI

Staff Author
Nigeria
Mikaiah Oyepintemi is a medical laboratory scientist and health writer with experience spanning diagnostic medicine, evidence-informed health communication, and digital health education. His clinical background provides a strong foundation in laboratory testing, disease interpretation, and the role of accurate diagnostics in clinical decision-making.

Alongside his laboratory practice, Mikaiah works at the intersection of healthcare and content, translating complex medical and scientific information into clear, accessible writing for professional and public audiences. His interests include rare diseases, diagnostic challenges, and the importance of reliable laboratory data in improving patient outcomes.

DR. RICHA LAL

Staff Author
United Kingdom
Dr. Richa Lal is a medical professional specializing in Anaesthesia with extensive experience across clinical practice, medical content editing, and healthcare management. She has worked in leading hospitals and organizations in India, Singapore, and the UK, contributing to preventive healthcare programs, clinical coding, health data analysis, and medical quality management. Currently based in Glasgow, she is a medical article editor with a strong focus on accuracy, evidence-based content, and clarity. Her background includes mentoring editors, managing medical teams, and collaborating on clinical software implementation, reflecting a balanced blend of clinical expertise and analytical skills.
Dr Richa Lal
Dr Steffie Mano

DR STEFFIE MANO

Staff Author
United Kingdom
Steffie holds a PhD in Chemical and Biomolecular Engineering, where her research focused on developing drug delivery approaches for biomedical applications. Her scientific background has given her experience in analysing complex research and understanding how emerging discoveries can shape healthcare and treatment development.


Steffie has developed a strong interest in science communication and enjoys presenting scientific ideas in ways that are clear, thoughtful and engaging. Through her writing, she hopes to create useful resources for curious students, researchers seeking to understand new developments, and patients and carers who value information explained with clarity, compassion and reliable evidence. 

She aims to help readers better understand advances in health and biomedical science, particularly in the rare disease field.
Dr Maha Mohammed

DR MAHA MOHAMMED

Staff Author
United Kingdom
Maha Mohamed is a Communication Specialist with a medical background, combining clinical understanding with strong communication and organisational skills. She currently works in a fast-paced environment, supporting coordination and delivering clear, effective communication across teams.

She has a growing interest in medical writing and public health, particularly in the field of rare diseases. Her interest developed through observing the challenges families face in accessing treatment for rare conditions, even when they are potentially manageable.

Through her writing, Maha aims to present clear, accurate, and accessible medical information to support awareness, improve understanding, and empower patients and communities.

Tarunikaa Muppala

Staff Author
United Kingdom
Tarunikaa Muppala is a healthcare writer and editor with a strong background in infectious disease epidemiology and regulatory affairs. She holds an MSc in Applied Infectious Disease Epidemiology from UCL and has experience translating complex scientific and clinical research into clear, accurate, and engaging content for diverse audiences, having edited healthcare articles at Klarity and supported toxicological risk assessments for medical devices at L&T Technology Services.

Her academic research, including work on HIV acquisition and outcomes among women in Europe and Canada, reflects a commitment to equity, evidence-based decision-making, and making data meaningful for real-world healthcare decisions.
Passionate about scientific communication, she enjoys breaking down complex topics into accessible and accurate messages that can inform, educate, and empower readers from clinicians to the wider public.

She is particularly drawn to rare diseases and the work of Rare Disease Watch, as it combines her interests in patient-centred communication, epidemiology, and making underrepresented health conditions more visible. Beyond writing and research, she has contributed to global health initiatives such as the National Pulse Polio Immunisation Programme 2022 in India and was part of a team at the Global Health Hackathon 2025 at Imperial College London to design community-focused sanitation solutions in Lagos, Nigeria.
Tarunikaa Muppala
Zainab Adamji

Zainab Adamji

Staff Author
Canada
Zainab Adamji is a scientific communications professional with a background in molecular science and experience in rare disease and health research. Her work focuses on translating complex scientific and clinical information into clear, accessible content for healthcare professionals, patients, and broader audiences. As a contributor to Rare Disease Watch, Zainab is committed to producing accurate, accessible, and thoughtfully structured content that helps readers better understand complex health topics and navigate the evolving rare disease landscape.

Join In

Rare Disease Watch is inviting volunteer authors to join our growing editorial team. We are looking for people who have a keen interest in science, healthcare, rare diseases, or research communication, and who would like to contribute to a trusted daily news resource for the global rare disease community. You do not need to be an expert, but you do need to enjoy accuracy, careful reading, and clear writing.

As a volunteer author, you will help translate complex research updates, regulatory news, treatment developments, and policy changes into clear, accessible articles. This role suits individuals who are curious, technically minded, comfortable with fine detail, and eager to learn the essentials of scientific reporting and SEO. We provide guidance, training, and support throughout, and you will always have help reviewing your work before publication.

Volunteers are asked to contribute at least one article per month. This is a meaningful opportunity to build your writing portfolio, gain experience in health communication, strengthen your understanding of rare disease science, and be part of a platform dedicated to improving access to trustworthy information for families, professionals, and advocates worldwide.

If you would like to join us, we would love to hear from you.

Rare Disease Watch

Our aim is to make complex information clear, accessible, and trustworthy. With concise reporting and consistent daily coverage, Rare Disease Watch helps professionals, patients, advocates, and families stay informed about what is changing in the rare disease landscape and why it matters.
All Rights Reserved. Rare Disease Watch©. Part of Honnao Ltd, Registered in England and Wales, Company number: 12345498. Trading Address: Highstone House, 165 High Street, Barnet, Herts. EN5 5SU, UK.
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