Rosie the Riveter style illustration

Make a Difference for the Bleeding Disorders Community

The bleeding disorders community needs everyone to get involved. Need some help getting started? Try these tips.
Author: Beth Howard

Feeling inspired to make a difference in the issues that affect the bleeding disorders community? There are several ways to help at the national, state and local levels. And don’t feel nervous about jumping in—you’ve got this, says Johanna Gray, federal policy adviser to the National Hemophilia Foundation (NHF).

“The members of our community are incredibly effective advocates—the best of the best,” Gray says. “The skills you use to advocate with your doctor, your health insurance company or your child’s school about needed accommodations are the skills you’ll use to testify at hearings, talk with elected officials and their staffers, send emails and participate in awareness events.”

Advocacy opportunities can take just a few minutes of your time—or take you and your family on trips to Washington, DC, to your state capital or to the local offices of your elected representatives. Here’s how you can speak up and make your voice heard.


1. Connect with NHF.

Sign up for advocacy emails at the NHF website. Be sure to check the box for the advocacy email list. Also, follow NHF on Facebook and Twitter.

“If something is happening that affects people with bleeding disorders at the federal level, we’ll send out action alerts telling you what’s going on, why it matters and provide important talking points so you can call or email your Congressional representative or senators in a timely way,” says Nathan Schaefer, vice president of public policy at NHF. “You’ll also find alerts on social media.”


2. Sign up for Washington Days.

The two-day event held each March is an opportunity for people affected by bleeding disorders to advocate for the issues that matter. “It’s very exciting—and a great way for kids to learn a lot about government,” Schaefer says. Learn more here.


3. Join your NHF chapter.

Local chapters provide many ways to get involved. “Lots of health insurance issues happen in state legislatures and in state government,” Schaefer says. Local chapters may also meet with US senators and Congressional representatives when they’re in their home districts.

Ask your chapter about taking part in the following four opportunities.


4. Visit your state capital.

“A lot of healthcare issues are decided on the state level,” Schaefer explains. “Meeting your elected representatives and telling your story can make a valuable impression. This is usually just a one-day commitment.”


5. Testify at hearings.

Community members’ voices are key on issues such as prescription drug coverage and health insurance. “Local chapters help identify individuals and families whose stories reflect the issues, and assist people in going through the proper steps to sign up to testify and prepare their testimony and written materials,” Gray says. “It’s really valuable to do this through your local chapter. They will help you link your personal story with the subject of the hearing. We recently worked with a family in Pennsylvania with several children with bleeding disorders. Each one had slightly different needs. That was a powerful story they presented at a state government hearing.”


6. ​Meet elected officials.

“Spending a half-hour or so with your representative when they have office hours close to home is another great way to educate them about important issues,” Schaefer says. “Meeting with their staffers is just as important—often, they’re the ones keeping an elected official updated on the issues.”


7. Participate in fundraising and awareness events.

“Community awareness is another powerful way you can be an advocate,” Gray says.