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Dear Addy: Eager to Advocate

group of young adults in front of Capitol

Dear Addy,

I am in my teens and am looking to get involved in advocacy within the bleeding disorders community. Can you share any tips on how to get involved and ways to learn more?Sincerely, Eager Teen

Sincerely, Eager Teen


Dear Eager Teen,

Advocacy is a great way for our youth to engage with the bleeding disorders community on a more serious level, and it’s wonderful that you feel ready to begin advocating for yourself and your community! There are many ways to get involved, both on a personal level but also within your local chapter.

On a personal level, it may be helpful to begin by figuring out who your local elected representatives are. This website may be helpful to you: https://www.commoncause.org/find-your-representative/. Simply input your home address to find your representatives on every level- local, state, and federal. Once you have identified your representatives, you can begin by taking the time to establish connections and relationships with their offices. This can be done by sending an email or calling the office and setting up a meeting either with the elected representative or one of their staff members.

In this meeting, it will be important to clarify that you simply want to bring awareness to our community, unless you are bringing up a specific policy ask (to support a bill, a piece of legislation, etc.). This is a great time to share stories and have conversations that emphasize the importance of our care networks, through hemophilia treatment centers, our local bleeding disorder organizations, and more. Establishing a personal connection is an amazing way to step into the world of advocacy!

On a more direct level, you can get involved in advocacy through many different bleeding disorder nonprofit organizations that hold legislative days and often provide partial or full coverage for travel. For this, you should contact your local chapter to learn more about what opportunities are available within your state or even on a federal level. On a national level, each year the National Hemophilia Foundation hosts Washington Days, which is a great way to plunge straight into advocacy while still being surrounded by incredible support and guidance. Additionally, the Hemophilia Federation of America holds an annual Young Adult Advocacy Summit for those aged 18-30, which can also be an incredible opportunity for older teens and young adults. Do some digging to see if your local chapter has some opportunities for you to get involved! Youth advocacy is incredibly important to maintaining our community’s access to care and overall wellbeing, so don’t be afraid to seek it out!

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