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Welcome to the first episode of the Rarely Discussed Podcast:
An American Porphyria Foundation Podcast, with your hosts Andrew McManamon and Nicole Castellano. We both have porphyria, a rare disease. 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. There are 300 million people around the world that live with rare diseases who share many similarities.
Let’s learn and heal together as we share our personal journeys and have meaningful interviews with porphyria and rare disease experts and families impacted by porphyria and rare diseases. We’ll talk about diagnosis, treatment, misdiagnosis, managing daily life tips, ways to cope physically, mentally and emotionally and everything rare.
We had the opportunity to chat with the one and only Tasha Alicea as she talked about her story, her struggles, and everything that has paved the way to who she is today as someone living with Hereditary Coproporphyria.
This is her Story.
An American Porphyria Foundation Podcast, with your hosts Andrew McManamon and Nicole Castellano. We both have porphyria, a rare disease. 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. There are 300 million people around the world that live with rare diseases who share many similarities.
Let’s learn and heal together as we share our personal journeys and have meaningful interviews with porphyria and rare disease experts and families impacted by porphyria and rare diseases. We’ll talk diagnosis, treatment, misdiagnosis, managing daily life tips, ways to cope physically, mentally and emotionally and everything rare.
