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Listen "Rare but Real: Navigating Porfiria, Advocacy, and Breaking the Stigma with Nadežda"
Episode Synopsis
In this episode, I sit down with Nadežda Pejović, a patient advocate and global representative, to explore the multifaceted challenges of living with rare diseases like porphyria.
🧩 Topics we dive into:
The stigma of saying, “I have an X disease”
How lifestyle, support, and surroundings impact coping
Empathy vs. pity: the delicate balance
Therapy accessibility and systemic issues in rare disease care
What it’s like to navigate healthcare systems in Serbia
Nadežda brings invaluable insights as someone who lives with porphyria and works tirelessly to advocate for patients worldwide. If you’ve ever wanted to learn more about rare diseases, systemic
change, and the power of understanding, this episode is for you.
💡 Don’t forget to subscribe for more thought-provoking episodes on science, academia, and personal journeys in healthcare!
🧩 Topics we dive into:
The stigma of saying, “I have an X disease”
How lifestyle, support, and surroundings impact coping
Empathy vs. pity: the delicate balance
Therapy accessibility and systemic issues in rare disease care
What it’s like to navigate healthcare systems in Serbia
Nadežda brings invaluable insights as someone who lives with porphyria and works tirelessly to advocate for patients worldwide. If you’ve ever wanted to learn more about rare diseases, systemic
change, and the power of understanding, this episode is for you.
💡 Don’t forget to subscribe for more thought-provoking episodes on science, academia, and personal journeys in healthcare!
In God we trust