RareChat | Registries

by | Aug 20, 2020

Introducing our next RareChat – Registries!

Join us on Wednesday, 26th August at 10:30am as we discuss your experience with registries and registry development.

Key points we’ll be discussing:

  • Your views on how sharing and collecting patient data could impact treatment
  • Challenges associated with patient data collection


This is your chance to connect with other patient group leaders and advocates in the rare disease community, so come share your insights, struggles and ideas with the wider community next week!

RareChat is currently sold out, but you can still join our waiting list for the chance to partake in our chat.

We hope to see you there!

To get you in the right mindset, check out the following resources:
Building your patient group data to drive research webinar