Advocacy is a powerful way to make a lasting difference for the bleeding disorders community. Whether it’s attending events like Great Lakes Hemophilia Foundation’s Wisconsin Advocacy Day or sharing your story directly with legislators, every effort contributes to shaping policies and improving access to care. At the Hemophilia Outreach Center, we are here to support you in making your voice heard—every step of the way.
The Ongoing Importance of Bleeding Disorders Advocacy
Our CEO, Jamison Buxton, understands firsthand the importance of bleeding disorders advocacy:
“In today’s ever-changing political landscape, it is more important now than ever that we participate in Advocacy. I will be honest; I have a terrible fear of public speaking. However, what gets me over that fear is the ability to speak on behalf of my family to those who represent us in government. I know that if our voices are silent, we could see extreme changes in the access to care for the bleeding disorder community. Your voice not only matters, but it also makes an incredible difference in how our community is viewed.”
Advocacy for bleeding disorders isn’t just about attending a single event—it’s about taking steps, big or small, to raise awareness, educate others, and inspire policy changes that benefit the bleeding disorders community.
How HOC Supports Bleeding Disorders Advocacy Efforts
At HOC, we understand that advocacy can feel intimidating, especially if you’re new to it. That’s why we’re here to help:
- Empowerment: We believe every voice matters, whether it comes from a patient, parent, friend, or loved one. Your unique story has the power to create change.
- Preparation: We provide resources, tools, and guidance to help you confidently share your story with legislators and other decision-makers.
- Ongoing Support: Whether you’re attending an event like Wisconsin Advocacy Day or reaching out to local representatives, we’ll be there to answer your questions and provide encouragement.
Why Sharing Your Story Matters
Your personal experiences are a powerful way to educate legislators and others about the realities of living with a bleeding disorder. When policymakers hear directly from those affected, it deepens their understanding and motivates them to support policies that improve access to care.
If you’re a parent or loved one of a patient, your perspective is equally vital. Sharing how bleeding disorders impact your family’s daily life can shed light on the community’s needs and inspire action.
How You Can Get Involved
Advocacy is a year-round effort. Here are a few ways you can make a difference:
- Participate in advocacy events like GLHF’s Wisconsin Advocacy Day to connect with legislators. Registration ends February 1, 2025.
- Write letters or emails to local representatives to share your experiences.
- Educate your community by speaking about the challenges faced by the bleeding disorders community.
- Reach out to HOC for support in preparing for advocacy opportunities.
“Before I participated in a Hill Day in Washington DC, I was both looking forward to it and apprehensive about it at the same time. I was also nervous about talking to real lawmakers. Once the day got going, I found it was one of the best experiences I’ve had advocating for those of us in the bleeding disorders community. While we didn’t meet with the elected representatives or senators, we met with their staffers who inform their voting decisions. Everyone we talked with was interested in what we had to share, and they were meaningful conversations! In the end, I left Washington DC excited to participate again and again in the future – both at Washington DC and here in Madison.”
— Chris W, HOC Community Member
Advocacy is an Ongoing Journey
At HOC, we’re committed to empowering our community to take action. Whether you’re sharing your story for the first time or have been advocating for years, know that you’re not alone. Together, we can amplify our voices and drive meaningful change for the bleeding disorders community.
Let’s make 2025 the year our voices are heard, our stories are shared, and our community’s needs are prioritized.
English
Afsoomaali
Español