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Women in RARE: Next Gen: Madison Fitzgerald

Welcome to Women in RARE: Next Gen. Here, we shine a spotlight on female rare disease advocates of the future. First featured in the Women in RARE edition of RARE Revolution Magazine


Madison

About you


Maddie Fitzgerald is a rare disease advocate with the US Hereditary Angioedema Association. She creates social media content for awareness and advocacy campaigns, and has been the host of multiple podcast episodes on the #BeyondHAE podcast. Maddie has been involved with legislative advocacy efforts on Capitol Hill and virtually, for bills such as the safe step act and charitable assistance. She has multiple rare diseases, including HAE and reflex neurovascular dystrophy, and as a result uses mobility aids frequently. Besides rare disease related things, she is a student at Duquesne University in Pittsburgh, Pennsylvania. Maddie studies environmental science, and is passionate about science communication and queer inclusion in STEM fields.


Your biggest motivation


My biggest motivation is improving medication access for rare disease patients, especially using avenues such as legislative advocacy. There is always more work to be done for orphan diseases and it takes a strong and united force to make change.


Your greatest achievement


I'd say that my greatest achievement might be presenting my research poster at a symposium. I love science and have accessible communication of concepts, so it was a really fun opportunity. Having rare diseases has prepared me to talk to people and explain in terms that they'll understand based on their background (like ER doctors vs friends at school), and I like that my experiences can apply to directly help me explain my research.



Madison


What's next to strive for?


I'm working on a series of videos for "a day in the life" with the HAEA. I like showing what my life looks like in the context of my rare diseases, and the adaptations that can be made to make things like dances and travel accessible. I'm also really excited to be involved with the HAEI Americas Conference in Panama coming up in March!


Advice to other up-and-coming advocates


You don't have to be any specific age or have qualifications to be an advocate! You know your story, and that is the most impactful part of advocacy in most cases. Whether it's social media, talking to legislators, or writing a testimonial, the audience will be the most interested in your personal narrative over a list of facts.


The tide will have turned for the rare disease community when...


More legislation is passed to improve rare disease medication development, the developed medications are accessible worldwide, and treatment is not a large financial burden


 

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