Rare but Real: Navigating Porfiria, Advocacy, and Breaking the Stigma with Nadežda

Rare but Real: Navigating Porfiria, Advocacy, and Breaking the Stigma with Nadežda

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!

Finale Sezone: Sve o Odgovornosti

Dok privodimo kraju prvu sezonu Puzzle Science podcasta, želela bih da se osvrnem na naše zajedničko putovanje kroz osam snažnih epizoda, od kojih je svaka obradila teme koje su mi izuzetno važne. Počeli smo sa Senkom, razgovarajući o identitetu, jedinstvu i vernosti svojim vrednostima u nauci i društvu. Darko je podelio zašto je važno biti povezan sa svojim korenima, a Branka je naglasila značaj sistemske podrške. Tim nas je podsetio na važnost glasnog zagovaranja i prihvatanja društvenih odgovornosti, dok je Karolina osvetlila uticaj rasta desničarske politike na imigrante i poverenje u nauku. Na kraju, Elizabeta mi se pridružila u tri epizode kako bismo istražile empatiju, odgajanje ljudi i zašto je ključno boriti se za prava. Neočekivano, svaka epizoda povezala se sa temom koja duboko odjekuje u meni: zajednicom i preuzimanjem odgovornosti prema njoj. To me dovodi do Srbije, gde su studentski protesti doveli do široko rasprostranjenih blokada fakulteta, zahtevajući pravdu i odgovornost. Njihova hrabrost inspiriše me da podignem njihov glas i podignem svest o njihovoj borbi za bolje društvo—borbu koju sam ostavila iza sebe, ali za čiju podršku sada preuzimam odgovornost. Setimo se reči profesorke Marije: „Gospodar nenormalnog rizika treba da snosi posledice njegove realizacije.“ Hvala vam što ste bili deo ove sezone. Vidimo se u drugoj sezoni, koja počinje 31. januara razgovorom o retkim bolestima sa divnom Nadjom. Ostanite jaki, budite svesni i borite se za ono što je ispravno.

Season finale: All About Responsibility

As we wrap up the first season of Puzzle Science, I wanted to reflect on the journey we’ve shared through eight impactful episodes, each covering topics that matter deeply to me. We began with Senka, discussing identity, unity, and staying true to your values in science and society. Darko shared why connecting to our roots is essential, and Branka emphasized the importance of system support. Tim reminded us to speak up and embrace our societal responsibilities, while Carolina shed light on the effects of right-wing political growth on immigrants and trust in science. Finally, Elisabeth joined me for three episodes to explore empathy, raising humans, and why standing up for rights is critical. Unexpectedly, every episode connected to a theme that resonates profoundly with me: community and owning our responsibilities to it. This brings me to Serbia, where student protests have led to widespread faculty blockades, demanding justice and accountability. Their courage inspires me to amplify their voices and raise awareness about their fight for a better society—a fight I left behind but now take responsibility for supporting. Let’s remember the words of Professor Marija: "The master of an abnormal risk should bear the consequences of its realization." Thank you for joining me this season. I’ll see you in season two, starting January 31st, with a conversation about rare diseases with the lovely Nadja. Stay strong, stay aware, and stand for what’s right.

The final chapter with Elisabeth: Female Startups, Leadership, and Lessons Learned

In this special finale, we wrap up our insightful conversation with Elisabeth Pavez-Lorie, diving into the challenges of being a CEO and a female co-founder in the demanding world of startups. We discuss the importance of humility, embracing diversity, and rethinking approaches to preclinical studies in light of 2024’s tough startup climate. Elisabeth shares her perspective on the so-called snowflake generation and why standing up for people’s rights matters more than ever. Before diving into the episode, I want to shine a light on the student protests in Serbia. Following a tragic incident in Novi Sad, where corruption and mismanagement led to the loss of 15 lives, citizens and students are demanding accountability. Despite oppressive measures, their determination to fight for justice is inspiring. Let's raise awareness and stand in solidarity. Enjoy this thought-provoking conclusion to our conversation. Wishing you a Merry Christmas, wonderful holidays, and moments of joy with those who matter most. And as always, listen to your heart.

Parenthood Unfiltered: Raising Humans with Dr. Elisabeth Pavez-Lorie (Part II)

Welcome to the last month of 2024! In this Part II episode with Dr. Elisabeth Pavez-Lorie, we dive deep into the raw realities of motherhood—and parenthood as a whole. We explore why it’s essential to walk the talk, shifting the narrative from motherhood to parenthood, and how to raise children with a mindset of contributing to humanity. From teaching about consequences to accepting when your child is no longer a child, this episode brings wisdom, vulnerability, and practical insights. We also tackle tough topics: dealing with bullying, supporting abused children, losing health, and the importance of showing vulnerability to your kids. Wrapping it up, we reflect on the ever-elusive work-life balance and question whether a "church-state separation" approach applies. Tune in, listen with your heart, and let’s embrace the beauty and challenges of raising the next generation!