No two patients with generalized myasthenia gravis have the same needs, recognizing that generalized myasthenia gravis is a heterogenous disease, and every patient has a different journey.

“We heard a lot from the patient community that when they went into their appointments with their healthcare providers, the conversation didn’t truly align with the milestones and the goals they wanted for themselves. They wanted more of their voice to be heard, more of their unique lived experience to be understood to tell an accurate story of their quality of life and daily living,” said Aprill Lane, US Patient Advocacy Lead.

That’s why an individualized approach to caring for people living with generalized myasthenia gravis is critical.

At UCB, we have made an informational resource available to help people living with generalized myasthenia gravis to identify their individualized goals and prepare for meaningful conversations with their healthcare providers.

Titled, “Empowering yourself while living with generalized myasthenia gravis: setting goals for the future,” UCB designed a workbook to help empower people living with generalized myasthenia gravis along their journey. The workbook encourages them to participate in shared decision-making to create a care plan tailored to their needs.

“The objective to make this informational resource available to help people living with generalized myasthenia gravis define their values, goals, and preferences to identify what matters most to them,“ said Tyler Story, PhD, Head of Medical, US Rare Diseases. “Shared decision-making between people and their providers may result in the best possible care plan and boost their confidence in the plan they make together.”

This workbook is for any person living with gMG who wants to better understand their care and would like to work with their healthcare provider to take an active role in creating a treatment plan together. This workbook was a co-creation process with a steering committee composed of patient advocates, neurologists, and shared decision-making experts, co-created by a team of people who truly understand what it’s like to live with generalized myasthenia gravis.

People living with generalized myasthenia gravis can obtain the workbook directly through UCB by contacting UCBCares®:
1-844-599-CARE (2273) 
UCBCares@ucb.com

The content of this article is intended for a U.S. audience only.

UCBCares® is a registered trademark of the UCB Group of Companies.
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