What is Bleeding Disorder Advocacy—3 Steps to Get Started

What Is Advocacy?

What is Bleeding Disorder Advocacy—3 Steps to Get Started

As a person living with a bleeding disorder, staying informed and getting involved with current healthcare legislation can have a significant impact on the level and quality of care available to you.

For example, persons with a bleeding disorder in the state of New Jersey have increased access to hemophilia treatment options. This level of care is a direct result of local lobbying and the actions of the Hemophilia Association of New Jersey (HANJ) on behalf of the bleeding disorders community, with the goal of ensuring that bleeding disorder patients have options, access to comprehensive care, and adequate reimbursement.

In every community, opportunities exist for people concerned about bleeding disorders to make a difference. On this page, you will learn about different ways you can be involved in advocacy efforts. There's also information about bleeding disorder organizations and resources available to help make your work successful.

What Is Bleeding Disorder Advocacy?

Advocacy means supporting a cause by pleading or arguing in its favor. Advocacy may be as simple as making sure you as an individual get the care you want and need—being an advocate for yourself.

For many people, however, advocacy involves a broader scope—being an advocate for the bleeding disorders community. Bleeding disorder advocacy may mean working with legislators, regulators, insurance companies, or healthcare organizations. Advocacy work may occur at the local, state or national level. Whatever the scope or level, there are several important steps for any type of bleeding disorder advocacy work.

Step 1: Be Informed

The first step in any type of advocacy work is learning. Gather as much information as possible about an issue. And don't forget that the world of bleeding disorders is always changing, so you'll need to keep learning. Being informed is a continuous process.

Bleeding Disorder Advocacy

How do you start? On this website, you can find a great deal of information, as well as links to many reliable sources, on the web and in print. Your local or state bleeding disorders organization can also help with providing current research about a wide range of medical, political, and financial issues relating to bleeding disorders.

Step 2: Identify Hemophilia Resources

As you learn, you will also begin to identify resources that can help with your advocacy effort. If you are considering a legislative initiative, you will find that a successful legislative campaign requires strategic coordination.

Bleeding disorder chapters and organizations may be in the best position to coordinate these efforts by ensuring that consumers, healthcare professionals, and medical providers are all actively engaged in the process.

Washington Days, the National Hemophilia Foundation's (NHF's) annual legislative conference, offers many ways to learn about and be involved in the legislative process. This event includes meetings with legislators, educational updates and briefings, and advocacy training sessions.

Step 3: Get Started With Bleeding Disorder Advocacy

The landscape for hemophilia—legislation, reimbursement, medical advances—is constantly evolving. With all the changes occurring, it is more important than ever to get involved in finding solutions and ensuring options for the bleeding disorders community.

To help you get started, here's a list of links to reliable resources. Your journey to an advocacy role can begin with just a click.

  • For links to nonprofit and international bleeding disorder foundations, read this article that can help you Become an Advocate.
  • For more information on bleeding disorders legislation and ways to stay involved in furthering the interests of the bleeding disorders community, visit HANJ's website.
  • For information and registration for Washington Days, visit the NHF website.

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