MGFA is regularly invited to attend conferences, sessions, and local events across the country and around the world to represent the needs of the myasthenia gravis community. Whether it’s for a patient conference or science-focused event, we always feel excited to meet new people and communicate the challenges MG patients face to a wider set of advocates.
In October 2023, the MGFA was honored to receive an invitation to participate in the INSPIRE Advisory Board, hosted by international healthcare company Roche, as well as the MSMilan Patient Community Day Conference in Milan, Italy. The INSPIRE Advisory Board is an ongoing collaboration of patient advocacy organizations across various rare disease types that kicked off in 2022.
The goal of the board is to strategize ways to drive increased awareness about rare disease around the world while creating engagement opportunities. We had the unique opportunity to meet and collaborate with leaders and patients from the European Myasthenia Gravis Association as well as advocacy organizations focusing on multiple sclerosis, myelin oligodendrocyte glycoprotein antibody disease (MOGAD), neuromyelitis optica spectrum disorder, and autoimmune encephalitis. These committed groups are dedicated to their patient communities, and there are so many synergies between the great work they do and how we help and fulfill the needs of the MG Community.
The initial outcomes for this meeting include a rare disease op-ed media piece that will direct international attention to the rare disease space and the challenges that patients and advocates face on a daily basis. Our collaborative efforts also will result in an online platform directing people to the educational and advocacy materials we produce for our patient communities. This represents another interactive method of engaging people around the world and ensuring they understand the patient challenges, symptoms, treatments, and management needs across the myasthenia gravis space and wider rare disease instances.
We also had the opportunity to present our MGFA Online Community to the board and showcase our efforts to convene and educate the MG Community via a platform that is so different from a website or bulletin board. The Online Community resembles a neighborhood of small buildings and structures that contains rooms, educational materials, medical resources, chatrooms, and videos to help MG patients and caregivers get the information they need to manage their MG. We were so excited to showcase this wonderful MG resource and demonstrate thought leadership in patient support and education.
Finally, we were invited to the MSMilan Patient Community Day conference – another unique and heartfelt opportunity for us. It was just an amazing chance to hear from patients, medical professionals, and health experts about the many physical and mental challenges that rare disease patients experience every day. The push is for “brain health” and the many neurological needs that our communities have when dealing with rare disease.
The patient panel discussion was poignant, powerful, and critically important to experience, and it was wonderful seeing these panelists empower themselves by speaking about their diseases and how they live their lives every day. Such an inspirational group of stories – and groundbreaking research in the coming years.
We thank Roche and our friends at the INSPIRE Board for inviting us to participate and lend our expertise and leadership to find ways to make life better for those diagnosed with rare disease.
Michael Antonellis is Vice President, Global Marketing & Communications, for the MGFA.