If you’re living with hemophilia, you know the impact the condition has on your life — but it’s likely that other people in your orbit may not fully get it. That’s why it’s important to raise hemophilia awareness for your friends, family, and community year-round.

Start by Raising Your Own Awareness

Before you can create public awareness by sharing information with others, it’s a good idea to understand the specifics about hemophilia, including symptoms, causes, and treatments.

Hemophilia is a chronic condition with no cure, but it can be effectively treated in most people. Uncontrolled bleeding is the most common symptom of hemophilia, but it can also cause pain, fatigue, depression, and joint damage. On average, people with hemophilia have similar life spans as people without hemophilia.

Learn About Hemophilia Advocacy Groups

Several organizations in the U.S. work to support people with bleeding disorders through research, education, and hemophilia advocacy.

• The National Bleeding Disorders Foundation (NBDF) is one of the largest U.S. advocacy organizations for people with hemophilia and related conditions. NBDF funds research, trains healthcare professionals, and pushes for better access to treatment.
• The Hemophilia Federation of America (HFA) focuses on education and political advocacy. It provides resources on insurance, financial assistance, and healthcare access.
• The World Federation of Hemophilia (WFH) is an international nonprofit that works to improve care for people with inherited bleeding disorders in countries around the world.

Whether you are newly diagnosed or have been living with the condition for years, these hemophilia support groups are important resources.

Share Awareness Resources

After you’re armed with information about hemophilia, you can share it with others. The fastest and least expensive way for this kind of advocacy is to share information through social media.

You can post information about hemophilia, share details about the condition, and join communities of other people who are also working to raise awareness about hemophilia.

If you’re comfortable, you can share your personal story. If not, you can share the stories of celebrities with bleeding disorders, and you can also reshare posts from bleeding disorders organizations.

To ensure your messages on social media reach as many people as possible, consider using an appropriate hemophilia-related hashtag, like #HemophiliaAwareness or #BleedingDisorders. This way, your posts will be seen by more people who have the same interests, and they’re more likely to share and comment.

Participate in Hemophilia Awareness Activities

You can help raise bleeding disorder awareness by participating in an in-person activity. By participating, you can help other people understand more about hemophilia while having fun and potentially raise money for the cause.

Hemophilia Activities List

Consider one of these hemophilia activities to support the cause:

• Walk or run in a bleeding disorders awareness event.
• Partner with members of your local NBDF chapter to host an event.
• Host a dinner party, a bowling night, or another activity to teach your guests more about hemophilia.
• Partner with a local business that may be interested in supporting hemophilia awareness.

You can always choose an activity that is uniquely suited to your personal passions.

If you are able, you can also donate (and encourage others to donate) to your favorite bleeding disorders organization.

Bleeding Disorders Awareness Month

Every March is Bleeding Disorders Awareness Month, a nationwide campaign to raise awareness and support for people living with hemophilia and other bleeding disorders.

During this time, the major bleeding disorder groups host events and provide lots of opportunities to get involved. It’s a great time to connect with the hemophilia community — whether online or in person.

World Hemophilia Day

Every year on April 17, the international community honors World Hemophilia Day. This event is organized by WFH. Each year, the organization spotlights a key theme that is important to the health and well-being of people with hemophilia.

This is a great way to keep the momentum going after Bleeding Disorders Awareness Month.

Join the Conversation

On MyHemophiliaTeam, people share their experiences with hemophilia, get advice, and find support from others who understand.

Have you taken part in hemophilia awareness activities or advocacy efforts? Let others know in the comments below.