Rarely Discussed Podcast @[email protected]
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Welcome to Rarely Discussed, an American Porphyria Foundatio
Welcoem to posts!!
in the future - u will be able to do some more stuff here,,,!! like pat catgirl- i mean um yeah... for now u can only see others's posts :c
Welcome to Rarely Discussed, an American Porphyria Foundation Podcast.
Join your hosts Andrew McManamon and Nicole Castellano. We both have Porphyria, which is a rare disease. As scientifically different as rare diseases can be, we share many similarities on how it affects our lives. We want to open the discussion and give the porphyria and rare disease community a safe place to connect, learn and heal. Being rare can feel lonely and isolating, but together, we are stronger. Let’s take a journey together as we share our personal stories and have meaningful interviews with porphyria and rare disease experts and the patients and families impacted. We’ll talk diagnosis, treatment, misdiagnosis, managing daily life tips, ways to cope physically, mentally and emotionally and everything rare.