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Featured Article

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Finding Hope Through LAM Community Engagement

Posted on May 14, 2021   |   

I was diagnosed with LAM and probable Tuberous Sclerosis Complex (TSC) in 2019 at 26 years old, when I was working three jobs and attending graduate school in Colorado. As an active twenty-something still trying to figure out my life, the stress of understanding what this diagnosis meant for my future weighed heavily on me.

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Topics: Community Engagement diagnosis        Categories: Patient Profiles

Recent Articles

Author: maria pearson

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Rare Disease Advocates at Work!

Posted on September 29, 2017   |   

Global Genes Summit

Development Manager, Katie Jensen recently traveled to the Global Genes Rare Patient Advocacy Summit to learn from and collaborate with other rare disease leaders. Read about what she learned, who she met, and why she’s even more inspired for the Patient Benefit Conference & LAMposium LA!

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Topics: Advocacy Global Genes LAMposium LA Patient Benefit Patient Benefit Conference Rare Diesases TS Alliance        Categories: Educational Resources