Being an advocate isn’t as hard as you may think! There are a plethora of ways to be involved, take action, and stay informed in the bleeding disorders community. No matter the path you choose to take in your advocacy journey, HFA is always here to help you with resources, ideas, and support.
Below are a few ways you can get involved. Your voice is essential!
|HFA Community Chronicles: Everyone has a story to tell! In 2017, a United States Senator shared that the reason be became so passionate about a ban on lifetime limits was due in part to repeatedly hearing the story of a bleeding disorders patient. Use our Community Chronicles story bank to share why having access solid and consistent health insurance coverage is important to you.|
|State Legislative Days: Many of HFA’s local member organizations host annual visits to their respective state capitals and legislators to advocate about current legislation facing their state and to raise awareness. Find out when your state organization is hosting their state house days and join them!
Use our Legislative Day toolkit to help you be a better advocate!
|Project CALLS: If you’ve been denied services or have received an exception by your insurance company, been forced by an “fail” on a product before being allowed to use the product of your choice, been mandated to a pharmacy that is not meeting your needs, and/or have been forced to go through a lengthy pre-/ prior-authorization process, we want to know!|
|Bleeding Disorders Awareness Month: President Ronald Reagan first proclaimed March Hemophilia Awareness Month in 1986, and the Department of Health and Human Services officially began recognizing the month as Bleeding Disorders Awareness Month in 2016. Join HFA in spreading awareness with our annual “Fact-a-Day” social media campaign, change your social media profile pictures, visit our advocacy action item a day calendar and more to participate in this awareness month.|
|World Hemophilia Day: The World Federation of Hemophilia started recognizing April 17 each year as “World Hemophilia Day” in an effort to raise awareness to the global concerns about bleeding disorders.|
|Rare Disease Day: February 28 is celebrated each year as Rare Disease Day, a day to raise global awareness about the more than 7,000 disorders that affect less than 200,000 people in the United States. Hemophilia and vonWillebrand Disease are two of the bleeding disorders recognized by the National Organization for Rare Disorders, Inc. (NORD), who is the official US sponsor of the day.|