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Featured Article

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Fighting for a LAM Diagnosis and Now a Cure

Posted on August 05, 2022   |   

For seven years, I continually searched for answers because I knew something was wrong with my health. I had a hard time breathing and started coughing up blood clots with exertion or exercise. I went to several pulmonologists, but no one could find anything. On a family trip to Greece in 2014, I had a severe episode while swimming with my daughters. I couldn’t breathe, I became dizzy and almost passed out.  I spent two days in bed without being able to move. The

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Categories: Patient Profiles

Recent Articles

Articles for tag Global Genes

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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