2024 Rare Disease Week on Capitol Hill
Siobhain Carolan, who lives with congenital myasthenic syndrome,
discusses her experiences advocating for those with rare diseases at 2024 Rare Disease Week
on the Hill.
Category: Our MG Voice Advocacy
Rare Disease Week: Highlighting Seronegative MG, a “Rare-of-the-Rare” Disease
The struggle seronegative myasthenia gravis patients face for
diagnosis and treatment.
How to Be an Advocate for Yourself and Others with Myasthenia Gravis
Rare Disease Day happens once a year, but you can bring awareness to
myasthenia gravis any day of the week!
When Every Day is Rare Disease Day
Illuminating the support rare disease patients need 365 days of the
year.
Rare Disease Week – Advocacy at Home and on the Hill
Rare Disease Week starts on February 28. Learn how you can advocate
for people with MG.
Janet Myder Was the Epitome of Dedication to MG Advocacy
Janet Myder was a Dedicated MG
Volunteer.
When Rare Disease Advocacy Is Personal
For Brenda Colmenares, an MG diagnosis set her on a path of rare
disease advocacy and awareness.
MG Patient Advocates Make Their Voices Heard During Rare Disease Week 2021
MG Advocates Describe Their Experiences During Rare Disease
Week
MGFA Partners with Rare Across America to Advocate for MG Patients
Volunteers Ensure Political Leaders Understand the Challenges of
Rare Diseases like Myasthenia.
An Inspirational Myasthenia Hero for So Many in the MG Community
Lenora “Lynn” Waltz was an
amazing advocate for the myasthenia community, with an inspiring story that touched so many
people.