Maintaining the voice of rare diseases in a new, virtual world: Insights from the European Conference on Rare Diseases (ECRD) 2020
Embracing European Reference Networks (ERNs) for patient engagement
Awareness of ERNs and education around their potential involvement needs to be a core focus to ensure that patients are at the centre of drug and trial development. Alpharmaxim have a deep understanding of the field of rare diseases and the challenges faced by patients in this unique area.
- Patients are at the heart of the focus of ERNs
- It can be challenging for patient groups and organisations to access ERNs
- Involving ERNs and patients at the earliest stage in the drug development process will help to ensure that patient-reported outcomes are realistic and achievable, ensuring that patient outcomes are improved
Be prepared to truly demonstrate your commitment to the rare disease field, particularly in these uncertain times.