The key to remarkable rare disease registries

Building trust and collaboration with patient advocacy organisations

The life sciences industry and patient advocacy organisations (PAOs) in rare disease areas have a shared goal: to improve the lives of those affected by a given disease. Thus, both parties are invested in deepening their understanding of the disease and supporting research that can lead to the development of effective therapies.

In this latest whitepaper, our experts examine:

• Patient advocacy communities
• Real-world data use in patient advocacy organisations
• Several case studies on the use of rare disease databases
• Methods of future-proofing the registry design