‘Hot Line,’ other patient initiatives mark MGFA annual conference

More than 400 members of MG community gathered for 3-day event

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by Andrea Lobo |

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The 2024 National Patient Conference by the Myasthenia Gravis Foundation of America (MGFA) brought together more than 400 members of the myasthenia gravis (MG) community this week to educate participants about how to better manage their disease and raise awareness about treatments and clinical studies.

“We are so proud and excited to host this extremely influential, inspiring event each year. Bringing together MG patients and other members of the community to learn from and support each other is so powerful,” Samantha Masterson, MGFA’s president and CEO, said in a press release. “We have a record attendance in 2024 with many more individuals viewing the event virtually. I deeply hope that the MG community’s experience at the conference helps patients and caregivers better navigate their own unique MG journey so that they have an improved quality of life.”

The event included patients, caregivers, medical professionals, researchers, clinicians, and industry representatives, who gathered April 28-30 in Tampa, Florida and virtually.

MG occurs when the immune system mistakenly attacks proteins needed for nerve-muscle communication. This leads to symptoms of muscle weakness and fatigue, which impact speaking, swallowing, walking, and sometimes breathing.

The MGFA is the largest patient advocacy organization for improving MG patients’ quality of life, finding better treatments and, ultimately a cure, for the disease. The organization funds promising clinical research, provides programs centered on patients, and develops educational materials for the MG community.

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Improving MG patient experience

The foundation is also highlighting new information and programs to further help people with MG, such as the launch of a new MG Patient “Hot Line,” which is expected to happen in May.

This phone line will be manned by trained social workers and medical professionals who will provide patients and caregivers with access to the information and resources they need to better manage MG. The hotline won’t be offer medical or treatment advice.

Later in May, the MyMG Mobile App, which helps patients track treatments, find support groups and healthcare professionals, and access educational resources, will now allow patients to register their symptoms twice a day using the universally recognized MG-Activities of Daily Living scale. The entries can then be shared with a medical team.

Patients can also actively contribute with live, self-reported health data to the MGFA Global MG Patient Registry. This will help researchers develop research studies and clinical trials to evaluate the most promising candidates and find better treatments.

Other initiatives include translating educational materials into different languages so patients and caregivers who don’t speak English as a first language can access relevant information.

The MGFA’s signature MG Walk is also returning with three planned events this year. One will take place May 18 in Boston, another is set for Sept. 21 in New York, and the third will happen Nov. 2 in Tampa Bay. The fundraisers aim to support and fund the organization’s programs and resources.

The foundation will also host the 15th Myasthenia Gravis International Conference next May in the Netherlands. The medical and research conference, held every three years, brings together researchers from around the world to discuss the latest studies, data, and outcomes from MG clinical studies.