Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
Learning Objective: Develop an understanding of how individuals can impact public policy.
Answer and defend your answer:
What is an innovative way that the bleeding disorders community (individuals or organizations) could influence lawmakers and regulatory agencies?
It was funny listening to all the podcasts about ways to become more engaged and the last sentence I’m writing is “successful interest groups must be able to build coalitions with other interest groups in the search for workable majorities.” This is what we were discussing when we met in KY, which may turn into a possible project for me. At our annual meeting in VA, we invited a delegate to speak about advocacy. After we talked hemophilia numbers-how many are affected, how many in VA-he gave this same advice. Is the hemophilia community already part of a rare disease coalition? I think this needs explored, it may give us more force in Washington.
I really like Krista’s idea! Power in numbers, and I’m sure our issues broadly overlap with other rare disease groups.
I am struggling with my own answer to this question in general and will work more to develop an idea, but I know I’d like to focus around insurance specifically.
HFA is in several coalitions: https://www.hemophiliafed.org/our-role-and-programs/what-is-hfa/partner-alliances-coalitions/
Over the last several years, we’ve been very involved in the Burrito Coalition. While this coalition not only includes rare disease groups, it also includes some of the larger health advocacy organizations. It’s good to have the ‘big’ guys in the mix because they have a lot more resources than some of the more rare disease groups.
HFA is also a member of NORD, or the National Organization for Rare Disorders, and we do engage with a number of other coalitions that are sometimes very issue-oriented.
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