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Going Virtual – Supporting the MG Community Online

Tyler Story, Patient Value Neurology & Europe/International Solutions - Medical Affairs
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Tyler Story, Patient Value Neurology & Europe/International Solutions - Medical Affairs
25-May-2020

The COVID-19 pandemic is impacting all of us in different ways, and we have been adjusting to a new normal over recent weeks and months. It is more important than ever for organizations to reach communities where they are. The unique challenges we are facing have led to new and alternative ways to reach and support patient populations, as more people turn to online and social communities to stay connected.

We know immunocompromised individuals, like those living with myasthenia gravis (MG), an autoimmune, neuromuscular disease, are seeking information on how COVID-19 could impact their lives and treatment plans. UCB is participating in ongoing conversations with patient advocacy groups and physicians about what resources are most helpful for people living with MG and their caregivers.

We are also following the lead of organizations like the Myasthenia Gravis Foundation of America (MGFA), who are quickly adapting their events from in-person to virtual settings. This flexibility allows patients, caregivers and their healthcare providers (HCPs) to continue learning and sharing – while maintaining a healthy distance from each other. 

Recently, UCB participated in the MGFA national conference, which was held in an online setting this year. The event featured a virtual exhibit hall and web-based education sessions related to clinical trials, treatments, awareness and tips for people living with MG.

UCB involvement included participation in the following events:
  • A panel discussion on how clinical trials work and considerations for people with MG who may be interested in participating in a trial.
  • A presentation around elevating voices of people with MG for advocacy, disease awareness and scientific advancement, which highlighted the many ways patients can do this. These included providing input on clinical trial design and endpoints, participating in trials and participating in patient ambassador programs like UCB’s MG Leadership Program to share their experiences. 
  • A medical booth as part of the virtual exhibit hall to provide HCPs and patients with information on clinical trials and the opportunity to participate in MycarinGstudy, a Phase 3 study in adults with generalized MG.

We were grateful for the opportunity to virtually connect with the global MG community to elevate patient voices in a safe environment. We will continue to take our cues from global MG community experts during this time, and we look forward to further collaborating on initiatives and resources that can provide true value to the patient communities we serve.

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