Sheela Upadhyaya

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 is currently chair for Together for Rare Diseases, supporting collaboration with European Reference Networks and Industry to improve the research in rare diseases.

Sheela has extensive experience in understanding the issues in rare diseases facing the healthcare ecosystem in terms from diagnosis,  service provision and access to therapeutics. These include modelling challenges, developing innovative access arrangements in liaison with industry, clinicians, patients and the healthcare policy makers.

Sheela has co-authored several papers that discuss challenges in rare diseases and HTA methods for assessing the value of orphan medicines and presented at many conference issue panels on the subject.

Sheela is an adviser to the European Haemophilia Consortium Think Tank, Chair for the ALS Coalition in Europe and Past Chair for the ISPOR Rare Disease special interest group.

Sheela has a passion for partnership working and believes that collaboration across the sector is the key to delivering high quality outcomes for all.