Advocacy In Action

Every day, members of our community demonstrate advocacy in their own unique ways. To celebrate and showcase these efforts, we invite you to explore our video series: Advocacy in Action.

When people think of advocacy, they often picture legislative efforts. In this series, participants will share their experiences engaging with local and state government officials to raise awareness about bleeding disorders and influence policy decisions. They’ll also discuss their work at the federal level in Washington, DC, advocating for impactful changes.

But advocacy extends far beyond government meetings. These videos will also highlight how members of our community advocate in their daily lives—whether it’s speaking up for their child’s needs at the doctor’s office, ensuring support in the classroom, or empowering their children to find and use their own voices. Advocacy in Action is a celebration of the many ways our community inspires change, big and small.

Tyler's Story

Tyler shares how he and his wife, Lissa, have created a supportive environment at home that empowers their son to advocate for himself. By encouraging him to speak openly about his bleeding disorder and express his concerns and anxieties, they are teaching him the value of using his voice. Advocacy is about empowering others and expressing yourself, and it is something we can all practice in our daily lives.

Brenda & Tim's Story

Video coming soon.

Michael's Story

Michael underscores the transformative power of personal advocacy and the importance of sharing your story. He explains how the personal experiences of patients leave a lasting impression on elected officials, helping to bring about meaningful change. By sharing your journey, you put a face to the facts and you can help us continue to make incredible progress.

Susi's Story

Susi shares her journey as a volunteer NEBDAC State Lead, representing New Hampshire, and how her advocacy work has empowered her to champion better access to care and reduce insurance barriers at the state level. Her experiences have not only benefited her community but also equipped her to confidently advocate for her son’s healthcare needs, ensuring he receives the care he deserves.

Scott's Story

Scott underscores the critical role of legislative advocacy at the federal level. During Washington Days, he and his wife, Mary, engaged with their elected officials to discuss key legislation, demonstrating how personal stories can illuminate the real-world impact of policy decisions. Scott’s experience emphasizes that open dialogue not only strengthens relationships with lawmakers but also enhances representation, paving the way for meaningful advancements in access to essential treatments.