This week's interview is with Noah Victoria, a 24-year-old rare disease patient who is in the process of self-publishing her first poetry book! Noah has abetalipoproteinemia, (also "abeta" or "ABL") is a rare, genetic condition where your body's ability to absorb fat and fat-soluble vitamins is impaired. We talk about therapy and the stigma around getting help (fitting since May is Mental Health Awareness Month), how our Catholic faith has shaped our rare disease journeys, what we wish people knew about rare diseases, and much much more!
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Noah’s Blog - http://unmeasurablegirl.com/
Noah’s Blog post with NIH - https://irp.nih.gov/blog/post/2020/02/irp-clinical-trials-provide-irreplaceable-hope
Noah’s article and video with Children’s Inn - https://childrensinn.org/stories/noah/
Noah’s article on the Washington Post - https://www.washingtonpost.com/local/she-was-asked-to-speak-about-her-two-ultrarare-diseases-she-did-while-also-telling-of-a-rare-place/2020/02/28/1e811912-5a4e-11ea-ab68-101ecfec2532_story.html
Noah’s blog on Our Odyssey - https://ourodyssey.org/our-odyssey-spotlight/noahlies?fbclid=IwAR0M-GI1JrI5YEdFzZNoUtEVp1w3xAM3DOa8agvZGNE80YTUAnunNTol5lc
Noah’s article with NORD - https://rarediseases.org/noah-victoria-2016-rare-impact-award-honoree/?fbclid=IwAR3tKMG2BxoQgr3KJBT1f19PsNYrZPQmUtg7lkViaOlgXDFJ_t7NzvtkSl4
