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Contact CamRARE

Sheela Upadhyaya

Independent Rare Disease Consultant

Sheela Upadhyaya

I am an independent consultant who supports organisations in delivering better overall outcomes in rare diseases.
Sheela Upadhyaya is an independent consultant to the life sciences industry having been in healthcare for over 25 years with the last 15 years in rare diseases. She commissioned rare disease services for NHS England and led the NICE Highly Specialised Technology program, evaluating medicines and technologies for ultra-rare conditions. Her most recent role at NICE involved her coordinating the response to the COVID pandemic and delivering a strategic response for NICE against the Rare Disease Framework. She now consults in rare diseases with the life sciences industry and leads a number of initiatives and projects within the space.

Advanced Therapies: : Navigating Challenges and Fostering Collaboration for Patient Access

Cell and gene therapies are changing the way we think about and treat rare diseases. We’ll ask “is there adequate service provision, staffing and infrastructure in place to deliver each and every gene therapy safely, effectively and efficiently?”

My three wishes for rare disease are: that the diagnostic journey is made more efficient; the prices of new therapies are more affordable increasing accessibility; and there is better and more impactful patient engagement from all stakeholders.

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