written by Kathryn Clemens, Myasthenia Gravis Association Community Program Coordinator
Attending this year’s Week in Rare, hosted by Global Genes in Kansas City, was an inspiring and eye-opening experience for me. As someone who is deeply involved with the Myasthenia Gravis Association, the opportunity to be part of this rare disease community was both personally and professionally meaningful. I left the summit feeling more connected to the broader rare disease community and recharged with new ideas and energy for our advocacy efforts.
Connecting with the Rare Disease Community
From the moment I arrived, I felt a sense of camaraderie among attendees. Whether it was at the opening sessions or during workshops, I had the chance to meet individuals, caregivers, and advocates from all walks of life, each representing a unique piece of the rare disease puzzle. It was particularly heartwarming to meet individuals who, like me, are focused on creating better awareness and support for rare conditions like Myasthenia Gravis. Hearing their stories of resilience and advocacy reminded me of the power we have when we come together as a community.
Insightful Sessions and New Learning
The keynote speeches and educational sessions were packed with information on understanding research, individual empowerment, community and capacity building. One of the aspects I appreciated most about the Week in Rare was how each session truly revolved around the attendees. The sessions weren’t just informative lectures—they were dynamic, interactive conversations between knowledgeable panelists and those of us in the audience. The panelists were experts in their fields or individuals with personal connections to rare diseases who were also genuinely eager to hear our questions and concerns. They wanted to know what we were curious about, what we were struggling with, and what information we needed to feel more empowered.
The emphasis on attendee participation made the sessions incredibly impactful. There was a real sense that the goal wasn’t just to present information, but to ensure that each of us left the summit equipped with new knowledge and actionable insights. By the end, I felt like I had not only gained a wealth of new information but had also formed deeper connections with others who are as passionate about rare disease advocacy as I am.
Advocacy in Action
One of the most impactful moments of the Week in Rare for me came during a session titled Empowering Advocacy: Federal, State & Patient Insights. I took the opportunity to ask a question that had been weighing on my mind: What can I do as an individual with no personal connection to a rare disease community to help advocate for others? The response I received was both enlightening and humbling.
The panelists graciously explained that while those living with rare diseases often carry the weight of self-advocacy, it can become a burden to always have to fight for recognition and support. They emphasized how much of a relief it is when individuals outside of the rare disease space step in to advocate on their behalf. It was a reminder that even without a direct connection to a rare disease, we all have the power to contribute to the cause by elevating their voices, lobbying for policy changes, and helping to reduce the stigma and isolation that many feel.
Looking Ahead
As I returned home, I reflected on how the Week in Rare reinforced my dedication to advocacy within the Myasthenia Gravis community. The Summit energized me to continue pushing forward with our fall newsletter and other MGA initiatives. I left with a deeper understanding of the rare disease landscape and a sense of optimism about the future of rare disease advocacy.
If you’ve never attended a Week in Rare event, I highly encourage you to participate. The opportunity to learn, grow, and connect with like-minded individuals is an experience you won’t soon forget.
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