Rarely Discussed

Living With Porphyria: A Patient And Caretaker Perspective - On this episode of the Rarely Discussed Podcast, Co-host Andrew McManamon had the opportunity to sit down with the DiPerna family to get the perspective of a Porphyria Patient (Daughter) AND the caretaker(s) (Parents) to tell the story of Claire DiPerna's diagnosis, her hardships, and what her parents, Erin and Jim had to face to ensure their daughter was getting answ...

From Porphyria To Cancer: How Trials Helped The Journey - On this episode of the Rarely Discussed Podcast, Andrew McManamon has the opportunity to sit down with Mike Boone, someone who truly defines resilience, someone we’d call a medical hero and I know he’d be too humble to admit, but the porphyria community is so small that even what you’d think are small commitments, mean the world to us as patients. Mike Boone was diagnosed wi...

Pregnancy & Porphyria: Living Life With Porphyria - Rarely Discussed hosts Nicole Castellano and Andrew McManamon had the opportunity to sit down with the one and only Megan Parrish, who has been a big advocate for herself during her Porphyria journey as well as the American Porphyria Foundation. Megan discusses living with Porphyria, what she's learned along the way as well as her pregnancy journey too. Stay tuned!

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A Perspective From A Scientist With A Rare Disease - During this special in-person conversation at The International Congress of Porphyrins and Porphyrias (ICPP 2024) September 21-25, 2024 held in Pamplona, Spain. Rarely Discussed hosts Nicole Castellano and Andrew McManamon had the extraordinary opportunity to sit down with Francesca Granata , PhD, molecular biologist and Porphyria expert, known for her Ted Talk titled, "How to s...

Spreading Awareness For Porphyria & Creating An Association. During this special in-person conversation at The International Congress of Porphyrins and Porphyrias (ICPP 2024) September 21-25, 2024 held in Pamplona, Spain. Rarely Discussed hosts Nicole Castellano and Andrew McManamon had the wonderful opportunity to sit down with Kika Shabot who is not only the acting vice president for the Global Porphyria Advocacy Coalition (...

How Journaling Has Led To Breakthroughs For Porphyria - During this special in-person conversation at The International Congress of Porphyrins and Porphyrias (ICPP 2024) September 21-25, 2024 held in Pamplona, Spain. Rarely Discussed hosts Nicole Castellano and Andrew McManamon had the wonderful opportunity to sit down with Derry Wilcox who is not only the Treasurer for the Global Porphyria Advocacy Coalition (GPAC) as well as the...

Why Finding Community Is Important When Dealing With A Rare Disease - During this special in-person conversation at The International Congress of Porphyrins and Porphyrias (ICPP 2024) September 21-25, 2024 held in Pamplona, Spain. Rarely Discussed hosts Nicole Castellano and Andrew McManamon had the wonderful opportunity to sit down with Nadezda Pejovic, the founder of the National Associations of Porphyria's Serbia, where she spe...

Using Pain Management Techniques To Ease Suffering with Dr. Judith Hudson. Nicole and Andrew had the opportunity to sit down with Dr. Judith Hudson who is a psychologist who specializes in chronic pain and addiction. She works for the VA and also serves on the American Porphyria Foundation scientific advisory board, and her focus is on the neuroscience of pain and alternative treatments for chronic pain. This is an episode you DO...

Why Advocating is the only way. Nicole and Andrew had the opportunity to sit down with Shelly Berman-Rubera, a business owner, coach, speaker and author who talks about the importance of advocating for yourself and how important it is to have a voice, especially when it comes to dealing with rare diseases.

Shelly, as an entrepreneur herself, has faced countless hurdles that she had to push through, and those valuable experie...

Dr. Roy E. Smith Talks Rare Disease & Treating Porphyria With Ease! Nicole and Andrew had the opportunity to sit down with Dr. Roy E. Smith out of Pittsburgh, Pennsylvania to talk about the treatment of Porphyria, his expertise on the matter, patient hardship and so much more. This is an episode you don't want to miss! Rarely Discussed Podcast 🎙️ →Rarely Discussed: https://beacons.ai/rarelydiscussed FOLLOW Rarely Discus...

Grieving The Life You Had With A Rare Disease & Being Content With The Little Things - It’s time to laugh! Nicole and Andrew had the opportunity to sit down with Debra Knapp. Debra was a successful attorney who began to have terrible acute attacks. Eventually, her disease was so difficult that she could no longer work. Now she is choosing to help patients face their porphyria. Debra has been a wonderful advocate and guide to n...

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...

A Caregivers Perspective On Rare Disease | Keeping Balance In Chaos - In this episode of Rarely Discussed, we decided to take on Porphyria and Rare diseases in the perspective of someone who is a caregiver and the hardships that come with being the support system for a spouse, and how finding balance amidst the "chaos" is crucial to keeping a relationship thriving.

Warren Hudson has been a MASSIVE part of the America...

We had the opportunity to chat with George Hodder and learn more about his story as someone who lives with the rare disease called Erythropoietic Protoporphyria (EPP). George talks about finding things that work for you, having a balance, ways he's coping, family and so much more. This story relates on so many levels to people dealing with rare diseases whether it's EPP or not there is value in this episode for you! Read...

Welcome to Rarely Discussed

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 discus...

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...