Taking the opportunity to hear directly from patients and their communities is an important part of staying in touch with the true purpose of the work we do everyday.
This panel webinar features patient advocates active in the events surrounding Rare Disease Day to give an inside look on what was discussed this year and what still needs to be discussed. The advocates covered topics like the challenges to collecting natural histories, the nuances of proper patient and caregiver support, and what successes the rare disease community has had in recent years. Tune in to hear all this and more!
