By virtue of having a bleeding disorder in your family, you ARE an advocate. But that can be an intimidating and overwhelming declaration for some. This toolkit provides resources, tips and tricks, and knowledge to help you be an effective advocate during legislative office visits.

Remember, lawmakers are people too! Your role as an advocate for the bleeding disorders community is to share the wealth of knowledge you have about your or your loved one鈥檚 bleeding disorder!

This toolkit includes:

  • presentations (recorded webinars, videos)
  • downloads (articles, documents)
  • links to other resources

Note: Inclusion of resources by a third party site or organization do not constitute an endorsement by HFA, the HFA Board, volunteers or staff.



How to Talk to Your Legislator_IMAGE Speaking the Language: How to Talk to Your Legislator: What do you need to know to have a successful meeting with your local, state and/or federal representative? In this presentation, hear tips for legislative meetings, including how to prepare, roles during the meeting, and follow-up for building relationships. You will also hear methods for sharing your personal story.
Storytelling for Advocacy:聽Everyone has a story to tell. For some, knowing how to shape and craft your words can be intimidating, especially when you are using storytelling for advocacy. Join HFA and Dana Norris, founder of Story Club, to learn about the art of storytelling and gain the skills to effectively share your personal narrative on how a bleeding disorder impacts your life.



be_an_advocate_FB Take Action Center: HFA鈥檚 one-stop-shop for current federal and state legislation affecting the bleeding disorders community, contact information for federal, state, and local legislators, and health care news.
policy_priorities_widget HFA鈥檚 State Policy Priorities: As a grassroots organization, HFA supports the community by providing information and tools to participate in monitoring, advocating, and supporting federal and state policies that impact the lives of people living with bleeding disorders. Current issues include: step therapy, prior authorization, specialty tiers, biosimiliars policies, etc.
Bill_to_Law Bill to Law: This one-page infographic explains how a bill becomes a law.
PGR_HowToTalkToYourLegislator_2017 How to Talk to Your Legislator: This one-page description shares how a typical meeting with a legislator is structured, things to remember, and how to prepare.

PGR_meeting roles_2017_oct_2017 Meeting Roles: This one-page description describes what type of participants attend meetings with legislators and what their usual role is.

PGR_WordsThatWork_2017 Words That Work: This one-page document explains what words work best when speaking with legislators, and what words to avoid.

PGR_WritingToYourLegislator_2017 Writing Your Legislator: This one-page document outlines tips on how to send a letter to your legislator to advocate for a particular issue.



Hemophilia & von Willebrand Distribution Maps: These one-page, CDC-based maps show the population of people with hemophilia and von Willebrand by state.

Hemophilia Maps

von Willebrand Maps

March_26_DA Dear Addy: HFA frequently receives questions from the bleeding disorders community related to advocacy issues. The questions often impact the entire community. In an effort to reach the largest audience possible with our responses to these widely applicable questions, HFA developed 鈥淒ear Addy.鈥 Questions submitted to this column are edited in order to protect privacy and should be considered educational only, not individual guidance. The following are Dear Addy questions and answers about legislative advocacy days.

NHF_lmage NHF: The National Hemophilia Foundation (NHF) is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. The following are from NHF鈥檚 Advocacy Tools and Resources webpage.

Congressional Management Foundation Congressional Management Foundation: The Congressional Management Foundation (CMF) works directly with Members of Congress and staff to enhance their operations and interactions with constituents. CMF also works directly with citizen groups to educate them on how Congress works, giving constituents a stronger voice in policy outcomes. The following are CMF鈥檚 guide to in-person legislative meetings, a report on citizen advocacy, and a former congressional staffer shares insights on how congress really works.

national conference of state legislatures National Conference of State Legislatures: The National Conference of State Legislatures (NCSL) is committed to the success of all legislators and staff. Their mission is to improve the quality and effectiveness of state legislatures, promote policy innovation and communication among state legislatures, and ensure state legislatures a strong, cohesive voice in the federal system. The following are resources to determine your state鈥檚 legislative calendar and how to engage with legislators.

National Kidney Foundation National Kidney Foundation: The National Kidney Foundation is the leading organization in the U.S. dedicated to the awareness, prevention and treatment of kidney disease for hundreds of thousands of healthcare professionals, millions of patients and their families, and tens of millions of Americans at risk. The following are advocacy resources include PDFs on the importance of advocacy, using social media to advocate, and networking at an advocacy event.



60 second civics 60-Second Civics: 60-second Civics is a daily podcast produced by the Center for Civics Education that provide quick and convenient ways for listeners to learn about the federal government, the Constitution, and US history. The podcast explores themes related to civics and government, the constitutional issues behind the headlines, and the people and ideas that formed US history and government.
childrens-hospital-association Children鈥檚 Hospital Association: The Children’s Hospital Association (CHA) advances child health through innovation in the quality, cost and delivery of care with our children鈥檚 hospitals. 鈥Be a Champion for Children鈥檚 Health鈥 is guide for advocates on ways to get involved in legislative advocacy at a local, state and national level.

Learning Central

HFA’s Learning Central: One of the ways you can learn about bleeding disorders is to educate yourself with medically-vetted, accurate information, like the educational information found in HFA’s Learning Central e-learning platform. You may learn something new or brush up on facts or gain the information you need to help educate others about bleeding disorders.

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