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Advocacy Tools & Resources


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Advocacy Tools & Resources


“Never doubt that a small group of committed people can change the world. Indeed, it is the only thing that ever has.” ~Margaret Mead

The bleeding disorders community has long been recognized as a strong voice in advocating for the needs of those affected by hemophilia and related bleeding disorders. NHF and local chapters offer opportunities for members of the bleeding disorders community to meet with their elected officials to tell their story:

Additionally, because advocacy is a year-long process, there are many other ways to participate in advocacy activities through NHF or your local chapter. Advocacy can include:

  • Writing letters to your elected officials regarding proposed changes to laws 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; and
  • Advocating with your healthcare provider about your unique healthcare needs.

If you are interested in becoming a better self-advocate or an advocate for the community at large, take a few moments to explore the tools and resources available to assist you in effectively communicating your story to legislators, government officials, payers, school or work personnel, media or others.

Remember YOU have an amazing story to tell and NO ONE can tell it better than you!