Leading myasthenia gravis patient advocacy
organization convenes more than 400 individuals diagnosed with MG
as well as medical professionals and researchers, clinicians,
caregivers, and industry.
TAMPA BAY, Fla., April 29, 2024 /PRNewswire/ -- More than 400
members of the myasthenia gravis (MG) rare disease community will
come together this week at the MGFA National Patient
Conference for support and a better understanding of how to
manage their disease while learning about the latest in treatments
and clinical studies.
Myasthenia Gravis Foundation of America (MGFA™), the
largest, leading patient advocacy organization solely dedicated to
the myasthenia gravis community kicked off its annual conference
today with a volunteer awards dinner and new program announcements.
The conference features patient stories and individuals diagnosed
with myasthenia gravis as well as presentations and discussions
from patients, caregivers, researchers, MG expert clinicians, and
pharmaceutical and industry partners. This is the largest gathering
of MG Community members each year and will focus on the state of MG
across treatments, medical and quality of life guidance, and
research.
"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," said Samantha Masterson,
president and CEO of the Myasthenia Gravis Foundation of America.
"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."
MGFA is making a series of announcements at the event (See event
program) while highlighting new information and programs to
help individuals living with MG:
MG Patient Hotline - MGFA will launch a new MG
Patient "Hot Line" that will provide patients and caregivers with
support, wellness strategies, and guidance for managing MG. This
phone line will be covered by trained social work and medical
provider professionals - not to give medical or treatment advice -
but to help community members better navigate their MG journey and
help direct patients to the information and resources they need.
Look to a launch in May 2024.
Translation of select educational resources – MGFA
has committed to translating select educational materials -
including most of myasthenia.org and the MGFA Online Community -
into a variety of international languages to help patients and
caregivers who do not speak English as their first language.
MG Walks – MGFA is so proud to re-launch its
signature MG Walks fundraising events this year. The organization
has established three walks this year - in Boston, New
York, and Tampa Bay in
2024. The MG Walks help fund and support the critical work of the
MGFA through its programs, materials, resources.
MGFA Global MG patient Registry – The MGFA Global MG
Patient Registry gives the MG community a loud voice in ensuring
that research studies and clinical trials are built to evaluate the
most promising MG research. By joining the MG Registry, MG patients
will be providing the live, self-reported patient health data that
research professionals need to find better treatments.
MyMG Mobile App – The MyMG Mobile App helps patients
track treatments, find support groups and medical professionals,
and access educational resources, webinars, and materials. Later in
May 2024, the mobile app will offer
an automated MG-ADL symptom tracking scale. Patients will be able
to track daily MG symptoms - twice a day - in the universally
recognized MG-ADL scale to share with doctors and neurologists.
15th Myasthenia Gravis International
Conference – This medical and researcher conference, held
every three years, will be hosted by the MGFA in May 2025 at the Postillion Hotel and Conference
Center in The Hague, Netherlands.
MG researchers and experts from around the world will convene to
present the latest studies, data, and outcomes from MG research
trials across a variety of countries.
Approximately 70,000 to 90,000 are diagnosed and living with MG
in the United States alone. MG
patients suffer with debilitating physical symptoms such as extreme
fatigue and muscle weakness that impact a person's ability to see,
swallow, smile, walk or breathe.
MGFA focuses on funding promising research discoveries for
better treatments while providing impactful programs, guidance, and
education to support members of the MG Community. There has been
extremely important progress in myasthenia research recently with
four new FDA-approved treatments and many new disease management
resources and educational materials.
About MGFA
Myasthenia Gravis Foundation of America
(MGFA) is the largest, leading patient advocacy organization solely
dedicated to finding better treatments and a cure for the rare
neuromuscular disease myasthenia gravis (MG). We fund the most
promising critical research discoveries and provide patient-centric
programs and educational materials to connect members
of the global MG Community and improve the lives of those living
with MG. You can visit MGFA at myasthenia.org.
MGFA Contact Information:
Michael Antonellis
Vice President, Global Marketing & Communications
mantonellis@myasthenia.org
+1-617-610-2411
Kate Stober
National Director, Digital and Content Marketing
kstober@myasthenia.org
+1-480-744-2705
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SOURCE Myasthenia Gravis Foundation of America, Inc.