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’s 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.
|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.|
|Take Action Center: HFA’s 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.|
|HFA’s 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: This one-page infographic explains how a bill becomes a law.|
|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.|
|Meeting Roles: This one-page description describes what type of participants attend meetings with legislators and what their usual role is.|
|Words That Work: This one-page document explains what words work best when speaking with legislators, and what words to avoid.|
|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.
von Willebrand Maps
|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 “Dear Addy.” 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: 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’s Advocacy Tools and Resources webpage.|
|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’s 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: 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’s legislative calendar and how to engage with legislators.|
|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.|
LINKS TO OTHER RESOURCES
|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.|
|Children’s Hospital Association: The Children’s Hospital Association (CHA) advances child health through innovation in the quality, cost and delivery of care with our children’s hospitals. “Be a Champion for Children’s Health” is guide for advocates on ways to get involved in legislative advocacy at a local, state and national level.|