Patient-driven insights into the impact of COVID-19 on the rare disease community

The COVID-19 pandemic had a profound impact on people around the world, but arguably none more-so than the rare disease community. Xperiome recently partnered with Magnolia Innovation, a healthcare research consultancy, to explore how COVID-19 impacted the rare disease community including changes in patient and caregiver behaviors and the emotional toll of the pandemic.

The survey elicited eye-opening responses that paint a picture of isolation, uncertainty, and a heightened sense of urgency for disease stability.

As we are now well into the second winter season of the global COVID-19 pandemic, this report considers how pharma can reflect on the lessons learned and play a part in equipping the rare disease community with the resources and information they need to feel empowered within the present day uncertainties.

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