Toolkit

Advocacy is a key part of the mission of the Virginia Hemophilia Foundation. On this page are links that will help enhance your advocacy skills, answer questions about advocacy, and arm you with the materials that you’ll need when talking with policymakers and others about hemophilia and bleeding disorders.

 

Click on the links for advocacy skill building and other information.

 

If you’re new at advocacy, you might want to start with the Advocacy FAQs. These answer questions about the “what” and “why” of advocacy on hemophilia and bleeding disorders, what I need to know to become a grassroots advocate, and how do I contact my legislators and the Governor.

For more information on advocacy, download the Grassroots Advocacy Guide: Virginia Style. This handy monograph will provide you with additional information on advocacy in Virginia. If you are seeking information on advocacy at the federal level, click on the links provided on this page for the Hemophilia Federation of America and the National Hemophilia Foundation.

If you need a one-pager with essential information on how to talk with your legislators, download Communicating with Your Legislators: A Handy Primer. Here you can find the “Cliffs Notes” version that you can take with you and read right before you visit with your legislator.

After your visit, you’ll want to provide the Foundation with information on what happened at your visit. The Advocacy Workgroup uses this information for targeting next steps for advocacy. Download the  Legislative Visit Feedback Form and provide us with the information on the visit. This should not take any longer than five minutes but will help us immensely.

Download the General Assembly 2009 Talking Points . This one-pager contains our main policy priorities (funding for the Bleeding Disorders Program, insurance coverage, and access to products and services) and useful talking points. Use this page when visiting with legislators and leave them a copy of it.

The Governor: http://www.governor.virginia.gov/.

The Advisory Board on Hemophilia (http://www.vahealth.org/BleedingDisorders/vahab.htm). The board advises and assists the Virginia Department of Health (http://www.vdh.virginia.gov) in the administration of the Virginia Bleeding Disorders Program.

Visit these websites to learn more about the General Assembly here in Virginia.

General Assembly of VA Bill Tracking

General Assembly of VA Homepage

Below are useful national advocacy links:

Hemophilia Federation of America: http://www.hemophiliafed.org/ . The Advocacy webpage contains an action center for advocacy on issues before Congress and sample letters and fact sheets.

National Hemophilia Foundation: http://www.hemophilia.org/.  The Advocacy Center webpage contains information on advocacy priorities, resources, updates, and an action center on Get involved.

Centers for Disease Control and Prevention: http://www.cdc.gov/. The CDC is a wealth of information on the public’s health, including health and safety topics, emergency preparedness, environmental health, and healthy living. Use information on the CDC site for information useful for advocating for yourself and others.

 

The Food and Drug Administration: http://www.fda.gov. 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.

Congress: House of Representatives: http://www.house.gov/ and Senate: http://www.senate.gov/. Get in touch directly with members of our Congressional delegation through the websites.

Thomas: http://thomas.loc.gov/. This website is the Library of Congress’s site for information related to all current and past bills before the Congress. Navigating the site takes getting used to, but it’s a wealth of information on bill language and status.