Patients

Advocacy Toolkit for Patients

Millions of Americans are affected by blood disorders each year, which is why it is important for everyone to know about the risk factors, symptoms, treatments, and prevention strategies for these disorders.

The ASH Patient section aims to raise awareness about the importance of healthy blood and about the most common blood diseases, such as anemia, bleeding and clotting disorders, and blood cancers. Help us reach this goal by sharing information about this campaign and blood disorders with your community, the wider public, and legislators. 

Help Make a Difference

ASH strives to improve hematology through education and training, patient care, research, and advocacy. The Society has established programs in support of researchers, trainees, junior faculty, and medical students. Consider making a gift to ASH today to help hematologists in the United States and around the globe as they work together to cure blood diseases and improve patient care.

Why Be a Hematology Advocate?

Perhaps you or a loved one has been affected by a blood disorder and you would like to support new efforts that encourage research and treatments for the disease. By becoming an advocate for hematology, you can help increase public awareness about blood diseases and support increased federal funding for research, which is critically needed to continue scientific advances in the field.

How Do Your Advocacy Efforts Help?

One of ASH's top priorities is securing adequate funding for the National Institutes of Health (NIH), the primary federal agency for conducting and supporting medical research. Each year, millions of Americans are affected by blood diseases. Hematology researchers are working to understand these disorders to enable the development of new and improved treatments. However, without adequate federal funding to support this important work, life-saving discoveries - such as those highlighted in the short film "Research Saves Lives" - would not be possible.

Research Saves Lives

When policy makers hear from patients and their families, it truly makes a difference. Learn more about why research support is critical by watching the film, and help spread the word by sharing this message with your friends and family. Send them a link to watch the video and encourage them to contact Congress.

What Can You Do?

  • Sign up for news alerts from ASH. Join the ASH Grassroots Network to receive advocacy updates by e-mail.
  • Read free content online. The ASH Patient section provides consumer-friendly information to educate the public about the importance of healthy blood and raise awareness about the most common blood diseases, such as anemia, bleeding and clotting disorders, and blood cancers. In addition, Blood content that is older than 12 months is free and available to the public online. Patients interested in obtaining a complimentary copy of a more recent article that is applicable to their situation may do so by e-mailing a request to the Blood Publishing Office at [email protected].
  • Watch hematology-related videos. A number of videos about blood, the history of hematology, and the importance of research are available on ASH's YouTube channel.
  • Network with others. By sharing information and working with others toward a common cause, you can provide a strong and powerful voice in support of hematology issues. Meet others with similar interests by attending annual conferences and workshops geared toward patients and their families. A list of hematology-related patient groups and other organizations that provide these types of opportunities is provided in the ASH Patient section.
  • Contact Congress. Participate in ASH advocacy campaigns. The ASH Advocacy Center provides tools to help you easily find your elected officials and send them advocacy messages. Tips on writing effective messages are listed below.
  • Spread the message. Write a letter to the editor or an op-ed piece for your local newspaper. Many patient groups also provide newsletters; ask if you can submit content. Social media provide another outlet to spread your message. Start a blog or Facebook page for your cause.

Patient groups are also encouraged to join in this effort. Help get the word out to your constituents by posting a link to the ASH Patient section on your site.

What's the Best Way to Share Your Message?

Included below are some effective strategies to help ensure that your message is well received:

  • Personalize your message. As legislators are most responsive to constituents in their own districts, be sure to write to the member of Congress for your district, rather than to every member of Congress. To find your representatives, you can search by ZIP code on the online ASH Advocacy Center. An individually tailored message will make a greater impression on your legislator than a generic one, so you may want to include a touching story or personal reason why a particular issue is important to you.
  • Be clear and concise. First impressions are important. If you are sending a letter to a member of Congress or a newspaper editor, be sure to type (not hand-write) your message and state your main point in the opening paragraph. As a general rule of thumb, your letter should not exceed two pages.
  • Be relevant. It is not enough to simply say that a particular disease is important to research. Letters to Congress should include mention of what specific action you would like to see taken. For example, request that your legislator vote a certain way on an upcoming bill. Letters to the editor should also be timely, and the topic should be connected to something happening in the news.