The Ripple Effect of Advocacy: Celebrating Rare Disease Day® and Beyond

As we mark another Rare Disease Day®, celebrated globally on the last day of February, it's a time for reflection on the journey of advocacy, connection, and empowerment that many of us have embarked upon with myasthenia gravis (MG).

This day underscores the challenges, triumphs, and the relentless spirit of those living with rare diseases, alongside the families, caregivers, researchers, and healthcare professionals who stand with them. With over 10,000 rare diseases affecting millions worldwide, Rare Disease Day is a crucial call to action for awareness, research, and policy change.¹

Uniting through advocacy

The path of advocacy has led to unexpected yet profoundly enriching outcomes. I have developed life-long friendships with fellow advocates, meaningful connections with legislative aides, and mutual respect with healthcare professionals, particularly highlighted in my relationship with my neuromuscular specialist who manages my MG. These relationships go beyond professional boundaries, fostering a collaborative effort towards better care and understanding.

The power of storytelling

Sharing our personal stories is at the heart of Rare Disease Day. It's about more than raising awareness; it's about humanizing the fight against rare diseases, creating a global support network that transcends borders. My own experiences of advocacy, from hospital beds to Capitol Hill, have taught me the importance of our voices. They have the power to influence policy, inspire change, and offer hope to those newly diagnosed or feeling isolated.

Celebrating connections and community

Rare Disease Day is a reflection of our collective journey and the connections made along the way. Celebrating this day, I'm reminded of the strength found in our MG community, the friendships forged, and the shared purpose that unites us. Whether through in-person events, virtual campaigns, or individual acts of storytelling, each effort contributes to a larger movement advocating for MG and the rare disease community.

This day is a testament to the power of advocacy and storytelling. It's a moment to recognize the impact of our efforts and re-energize for the challenges ahead. As we continue to share our stories and advocate for change, we honor the spirit of Rare Disease Day, moving closer to a world where no one faces a rare disease journey alone.

A call to action

Let this Rare Disease Day be a catalyst for each of us to share our journeys, to connect with others, and to take action in whatever capacity we can. Write your MG story, engage with legislators, and participate in community events. Every voice adds to the chorus calling for change and every story shared amplifies the message of hope and resilience.

In celebrating Rare Disease Day, we not only raise awareness but also celebrate the incredible experiences, connections, and victories along our MG journey. Let's continue to support one another with compassion and understanding, advocating for a future where every rare disease patient can live a life marked not by their condition, but by their achievements and their unwavering spirit.

Together, we are stronger, and together, we can make a difference.