EuMGA is a non-profit umbrella organization that began as a group of MG Associations sharing a common vision to make a difference in the lives of those affected by myasthenia gravis. The many member associations across Europe are working towards the same goal: to help individuals and their families affected by myasthenia gravis by offering support and raising awareness about the condition.
On November 15, 2025, the Romanian National Myasthenia Gravis Association celebrated its 20th anniversary. In an effort to truly appreciate and mark this incredible milestone, the association was inspired to publish a book of stories, entitled The Voice of an Invisible Disease: Myasthenia Gravis.
“We realized that beyond projects, events, and initiatives, the most valuable assets we have are the people themselves—their stories, their experiences, and the way each of them lives with this disease,” says Adriana Harja, President of the Romanian National Myasthenia Gravis Association. Not only is the book filled with the stories of those living with MG, but even the graphic design of the cover was done by Alisa Matei, who also lives with MG (learn more about her in this episode of “A Voice for MG”).
The importance of patient voices is beautifully highlighted in this collection of real-life stories of patients with MG. Adriana shares, “It is not a medical book. It does not provide definitions or statistics. It is a book about life; about frustration, adaptation, loss, but also about courage, humor, and hope.” Each story is real, relatable to those living with MG, and further underlines the unique experiences of those living with this rare disease.
Each patient was invited to write freely without any rigid constraints or fixed formats, allowing them to write from their own unique and personal perspectives. “The only condition was that their stories should reflect what positive outcomes they gained living with this disease,” Adriana added.
These stories have a way of reaching even those not living with the disease; healthcare professionals, family and friends of those living with MG, and the general public can find at the center of each story a connection to another human sharing their honest telling of their life experience with MG. Adriana shares, “We received feedback from people who read the book. They told us they found powerful fragments of life within its pages. They were able to better understand what a person with MG struggles with every day.”
There is something extremely powerful about human stories; they connect us in ways that textbooks and scientific or medical information cannot. “It showed us that the patient’s voice is not just relevant—it is essential. And perhaps most importantly, it reminded us that beyond the diagnosis, every patient has a story worth telling and worth listening to,” says Adriana.
EuMGA is deeply grateful for this amazing contribution to the shared goal of raising awareness of MG, but also to help those impacted by MG feel less alone. This book is already helping people across Romania, and it will continue to do so. “The power of patients’ stories is incredibly valuable. They are not only moving—they are real instruments of change, connection, and understanding,” Adriana shares, a message she would like to share with everyone.
May this be a reminder that each person living with MG has a story, that it matters, and most importantly, that we are not alone.
Congratulations to the Romanian National Myasthenia Gravis Association on 20 years of groundbreaking work! Learn more about the Romanian National Myasthenia Gravis Association, a member of EuMGA, or contact them here to find out how you can get a copy of the book.
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