• hoi_director@hemophiliaofiowa.org
  • 319.393.4007

How to advocate for your BD Community

How to advocate for your BD Community

Write to your local representatives!

Write to your representative

 A letter to your elected representative is a powerful tool. It helps policymakers understand the human impact of the laws they create.

A good letter tells a story of how a particular piece of legislation affects you. It includes personal anecdotes as well as facts about the law. It shows that you understand the issue, and want, in turn, to make your lawmaker understand how deeply this would affect you.

When writing a letter, a few things to keep in mind:

  • Be clear and concise. Try to keep the letter to one page.

  • Use personal information (you bleeding disorder; you medical costs, etc.)

  • Include photos

  • Convey urgency, not anger

Below is a sample letter which you can use as a template to write to your Senator, governor, other elected official, or local newspaper. This letter highlights the issues in the bill that would have the biggest effect on the bleeding disorders community.

Example letter

Meet Representatives in office or at Washington Days!

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

Hemophilia of Iowa is not offering a Legislation Day for 2018, instead we plan to give the members of HOI all the tools necessarily to successfully advocate for their community.

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 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; and
  • Advocating to your health care provider about your unique health care 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!

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