How Patient Voices Are Shaping the Future of MG Care

We are sharing this on behalf of a partner, Regeneron.

No two myasthenia gravis (MG) journeys look exactly alike. Symptoms can begin subtly, be misread or dismissed, and the path to diagnosis and long-term management can feel uncertain for people living with MG and caregivers alike. This variability is exactly why the voices of people with MG are so important. Regeneron, a leading biotechnology company that develops medicines for serious diseases, is taking a listen-first approach to ensure its work in MG reflects the actual needs and lived experiences of the community.

New Patient and Caregiver Survey Explores Treatment Decisions

Regeneron is launching a “Treatment Decisions in MG Care” survey to better understand how conversations about treatment choices happen (or don’t happen) in real clinics and homes. Adults (18+) living with MG and adult caregivers are invited to participate in the brief survey. Responses are confidential and anonymous.

The survey explores the following from the patient or caregiver perspective:

• How involved you feel (and want to be) in MG treatment decisions.

• The role your HCP currently plays versus what you’d prefer.

• Communication quality (time, clarity, and whether your preferences are heard).

• What tools would make visits more useful, such as plain-language summaries, visual decision aids, more time, follow-up, etc. 

• Interest in structured checklists or guides to support shared decision making. 

Individuals who would like to participate in the survey can take the following steps:

1. Confirm eligibility (adult with MG or adult caregiver of someone with MG). 

2. Click this Survey Link and complete the confidential questionnaire. Most people can finish in just a few minutes. 

3. We will compensate you for your time and insights with a $50 gift card.

4. Share with your MG circle. The more perspectives we gather, the better the tools we can co-create for clinic visits and care planning. 

Regeneron Partners With the Community to Shape Solutions

 Regeneron recognizes that the input of people with MG and caregivers will help shape practical resources—built with the community—to support more meaningful, two-way MG care planning.

“We were new to this community, and knew we needed to learn a great deal about the patient experience and the unmet needs,” said Rosemarie Sellati, Senior Director of Global Patient Advocacy. “The only way to do this was to work with the trusted sources for people living with MG and those trusted sources are Patient Advocacy Organizations.” 

Working with leading patient groups, Regeneron has helped establish an MG Council including patients, caregivers, and community representatives to review materials, identify unmet needs, and suggest practical improvements—right down to larger fonts, better color contrast, and more resonant imagery to accommodate ocular symptoms common in MG.

Regeneron has also joined conferences and regional health fairs to reach rural communities where specialty care and trial information can be harder to access. Keeping transparency front and center, Regeneron and its partners are sharing learnings from patient advisory boards at medical meetings to help advance MG disease management.

Collaborating with the MG Community to Map Real-World Needs

 Regeneron also recently supported an effort to better understand real-world experiences across the MG community, collaborating with MG experts, patient advocates, and caregivers to create a Myasthenia Gravis Patient Journey Map, which was presented at the Myasthenia Gravis Foundation of America 2024 Annual Meeting.

Using resources from MG organizations, one-to-one interviews with patients and caregivers, and guidance from an MG Patient Advocate Council, the team mapped key phases along the patient journey—from initial presentation, testing & diagnosis, treatment, and lifelong maintenance—to shed more light on prevalent challenges and unmet needs. 

Early findings underscored what many in our community already know: the complexity of MG makes it essential to identify the symptoms and daily-life impacts that matter most to people with MG and those who care for them.

What the MG Patient Journey Map Revealed

 Across the journey, members of the MG community reported pain points that can delay care and place a strain on quality of life, including:

• Initial presentation: Variable, non-specific symptoms and reports of symptoms being dismissed by both patients and healthcare providers (HCPs). 

• Testing & diagnosis: Limited MG familiarity among some HCPs as well as difficulties obtaining timely referrals, accurate testing, or access to specialty centers. People with MG also noted that long waits during the diagnosis process add anxiety to an already unpredictable disease. 

• Treatment decision points: There is a need for more MG-experienced HCPs and patients benefit when decisions are shared with their doctor. Moreover, real-world treatment decisions are shaped by cost, side effects, and treatment convenience. Many patients also reported low awareness of clinical trials—especially in rural/underserved regions. 

• Long-term management: Complex treatment regimens (including infusions) often require more involved caregiver coordination. In addition, invisible symptoms and accessibility barriers can contribute to isolation, work disruption, and financial stress. 

• Caregiver role: Caregivers frequently help patients navigate appointments, therapies, and advocacy for innovative care—reinforcing the need for strong support networks.  

The goal of this new survey is to build on these journey map insights—diving deeper into how treatment decisions are made and how communication can be improved.  

The broader rare disease community reminds us why this work matters—because strong communities make strong treatments. Learn more or take the Treatment Decisions in MG Care Survey today.  We will compensate you for your time and insights with a $50 gift card.