Panel: ‘Welcome to our World’ – recognising isolation and supporting people living with a rare disease through and beyond the pandemic

• Everyone now has a lived experience of isolation and concerns about the future and their own health - something rare disease patients live with day in and day out.  More thoughtful support would be welcomed by the rare disease community and Pharma companies need to step up and deliver initiatives given health systems are stretched by COVID-19.  Gone are the days when Pharma could focus their support solely on education of, and adherence to, treatments.  Psychological support will be an important element of reducing isolation and giving hope for the future and this will be a focus of this conversation. 

• As a patient engagement practice that prides itself on finding the moments that matter most to patients, we will explore where patient support programmes may fall short and how we have unlocked the power of the patient voice through co-creation to find the right solution for the right person in the right way at the right time.