Advocacy is a key part of the mission of the Virginia Hemophilia Foundation (VHF). VHF works to educate elected officials and other key stakeholders about hemophilia and other related inherited bleeding disorders. Every year VHF hosts our Advocacy Training and Richmond Days where constituents from around the commonwealth gather for training and meetings with their elected state officials to share their story and educate them about current issues affecting the hemophilia/bleeding disorders community. VHF also participates in the National Hemophilia Foundation’s annual Washington Days. This event provides an opportunity for constituents from across the nation to come together to learn about advocacy, discuss key issues impacting access to care, meet with elected officials, and put a face on hemophilia/bleeding disorders.
Advocacy happens every day and there are many ways to participate in advocacy activities throughout the year, including:
- Writing letters to your elected officials regarding proposed changes to law or regulations
- Meeting with other state decision-makers, including state departments of insurance and Medicaid agencies
- Educating health plans about the needs of the bleeding disorders community
- Educating schools and employers about the needs of the bleeding disorders community
- Advocating to your health care provider about your unique health care needs
If you are interested in learning more about advocacy and becoming a better advocate, take a few moments to explore the tools and resources below. Remember to check this page regularly for updates on advocacy issues and healthcare coverage.
You and your stories can help us make a difference!
If you’re new at advocacy, start with our Advocacy FAQs. This handout answers questions about what you need to know to become an advocate and how to contact your legislators.
For essential information on how to talk with your legislators, download Communicating with Your Legislators: A Handy Primer. This handout is a comprehensive one-pager that explains what to do before, during, and after your visit with your legislator.
If you are seeking information on advocacy at the federal level, visit the following websites:
- Hemophilia Federation of America
- National Hemophilia Foundation
- House of Representatives
- Congress.gov The official website for US federal legislative information.
- Centers for Disease Control and Prevention (CDC) The CDC website has a wealth of information on public health and safety topics, emergency preparedness, environmental health, and healthy living. Use the CDC website for information useful for advocating for yourself and others.
- The Food and Drug Administration (FDA) The FDA website has a wealth of information, including a link on biologics. Like the CDC site, this page is useful for enhancing your knowledge base, especially if you’re advocating for access to the full range of products and services.