We’re teaming up with Findacure to explore the ways to measure quality of life in rare diseases for the purpose of health technology assessment, and the ways that patient organisations can get involved in the process.

When developing drugs for a rare condition groups need to consider which evidence will be required by health technology assessment bodies to ensure a smooth pathway for patient access. While demonstrating that a treatment has a significant impact on outcome measures assessed by clinicians is key for the success of clinical trials, it has become increasingly important to demonstrate a real impact on the lives and wellbeing of the patients themselves to ensure positive reimbursement decisions and access.

We’re looking forward to what’s set to be an insightful session. Will we see you there? If you aren’t attending but would like to learn more about our work, please contact us for more information.