5: How Advocating Led To Breakthroughs | Living With Porphyria For Over 47 Years

How Advocating Led To Breakthroughs | Living With Porphyria For Over 47 Years - Andrew and Nicole had the opportunity to sit down with the one and only Terri Witter, who was diagnosed with Porphyria 47+ years ago before the American Porphyria Foundation was even established. Terri walks us through how she dealt with Porphyria before there was a process, the countless research studies she was apart of, her conversation with the FDA and how advocating for herself has led to extraordinary breakthroughs for everyone dealing with this rare genetic disorder. Stay tuned, this is one you don't want to miss! Get To Know Terri Witter: →Read Terri Witter's Story Here: https://porphyriafoundation.org/for-p...

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. Rarely Discussed Podcast 🎙️ →Rarely Discussed: https://beacons.ai/rarelydiscussed FOLLOW Rarely Discussed: →YouTube: https://shorturl.at/mtuwO →Instagram: https://shorturl.at/xGHPT →Tik Tok: https://shorturl.at/qEGQZ MEET Nicole Castellano: →Nicole's Story: https://t.ly/IsGK7 →Facebook: https://shorturl.at/krQZ8 →Instagram: / nicowildkat MEET Andrew McManamon: →Andrew's Story: https://t.ly/01JLz →Facebook: https://t.ly/kHuvX →Instagram: https://t.ly/Htuwg →Tik Tok: https://t.ly/eK1bP American Porphyria Foundation: →Website: https://porphyriafoundation.org/ →Instagram: https://rb.gy/osvb08 →Facebook Group: https://rb.gy/217o99 →YouTube Channel: https://rb.gy/9s0kcm