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Pišem o stvarima koje su mi važne: javno zdravlje, retke bolesti, imunizacija, osnaživanje

21/08/2026

Worried about investing years, money, and energy into your knowledge when the payoff isn't guaranteed?
When a journalist asked the actress Salma Hayek Pinault, "What's the most expensive thing on you?" (probably expecting her to name her outfit, she answered, "I don't ask for the price of things... Probably my brain!"

Since we're living in the knowledge economy, most people want what's between your ears (still can't get over that line I heard on the "Big Data" podcast, led by Codie Sanchez).

✨ Take, for example, me:
🔹 I am the first-generation graduate in my family to finish university and earn my BSc (both my parents studied, but then life came along...), and since I'm the older child, I had to "set an example..."
I didn't, and my sister chose a different path.
🔹 In the 20 years after my Bachelor's, I got my first job, then my second, had my first child, and then, while pregnant with my second boy, enrolled in Master's studies, finishing with him on my hip.
I changed jobs again, had a horrible experience when that baby became an oncology patient, saw him through treatment, and fought for my father's life twice in four years!
Due to sarcoma, I have organized his funeral completely on my own and changed jobs again.

🚀 In the meantime, informal education in patient advocacy gave me the strength to fight for patients and their families: building social capital and a network of collaborators, and advocating for change to improve quality of life.

🏆 Last year, I enrolled in PhD studies, trying to find answers about how a rare disease diagnosis influences the socio-economic dynamics of a family, and I'm working so hard to make that happen.

I founded Empowera Consulting with one simple goal: to become a reliable partner to those who need our help, bringing communication skills and visibility to healthcare professionals, private medical practices, and patient organizations.

🔔 Study. Share what you learned. Teach others how to do the same.
No matter the industry, the lesson remains the same: invest in your knowledge, because nobody can take that from you.
So, if you want a pep talk like this, let's meet and discuss your goals, if you're coming to:
📍 17th Conference organized by the European Sociology Association, next week (August 25–28, 2026) in Warsaw (Poland)
📍 "Caring for Rare" conference, Belgrade (Serbia), September 3-4, organized by NORBS - Nacionalna organizacija za retke bolesti Srbije - National Organisation for Rare Diseases of Serbia
📍 Round table at OPENS Novi Sad, organized by Hrabriša - Lil` Brave One on September 18th
📍 Annual General Meeting, September 24-25, Brussels (Belgium)

Looking forward to meeting you!

18/07/2026

I am pleased to share an important milestone in my PhD journey: my abstract has been accepted for presentation at the 17th European Sociological Association Conference.

This year's conference, planned to be in Warsaw from 25–28 August 2026, is centred on the theme "Strengthening Democracies: Social Action, Solidarity, and Sustainable Futures" and will bring together sociologists from across Europe and beyond to exchange ideas, present new research, and foster interdisciplinary collaboration.

I will be presenting my paper:
📌 "Reproductive Health in the Risk Society: Women's Intimate Lives and Reproductive Choices under Planetary Crises"
🗓️ 26 August 2026 | 14:30–16:00

If you will be attending the conference and have an interest in reproductive health, family sociology, gender studies, or the sociology of risk, I would be delighted to meet you.
I always value thoughtful discussions, the exchange of perspectives, and opportunities to develop new academic collaborations.

🔔 Please feel free to send me a direct message or leave a comment if you would like to connect in Warsaw?

04/07/2026

Consistency matters, and here is why:

Not because every post will reach thousands of people.
But because it may reach the right person at the right moment.
Someone may have just received a rare disease diagnosis and is searching for answers, language, and a sense that they are not alone.

At the same time, a young healthcare professional, researcher, or molecular biologist may be questioning whether their work truly makes a difference.

This is where patient advocates have a critical role.
Patient experts can become the bridge between lived experience and scientific knowledge.
We can help individual patients and their caregivers understand that their needs matter.
We can help professionals understand why their research, care, and communication have direct human impact.

In rare diseases, advocacy is not only about visibility.
It is about connection, translation, and trust.
It is about keeping patient needs at the centre of scientific and healthcare conversations.

My advocacy skills and consistent sharing of lived experience led me to participate in International Clinical Trials Day in Prague, Czech Republic, in May 2026, organized by and (European Clinical Research Infrastructure Network).

That opportunity did not happen overnight. It was built through showing up, speaking clearly, and sharing with purpose.
Once again I wanted to thank the organizers for this amazing opportunity, and amazing panel participants from whom I have learned so much!
🔸 Claudia Wild
🔸Zsofia Pusztai
🔸Carmen M Laplaza Santos, and
🔸Ana Hidalgo-Simon

🟡 What is keeping you from sharing your experience?
📸 Radoslav Vnenčak.

13/06/2026

After the promotion of the book Brand: YOU by Dejan Pataki , one thing stuck with me.

Consistency isn't about posting every day. It's about showing up with something only YOU can offer.

Yes - others may know what you know. But no one else has lived your story. No one else carries your scars, your breakthroughs, your perspective.

That's not information. That's a brand.

And AI?

It's impressive. It's fast. It knows a lot. But it has no opinion. No feeling. No skin in the game. It pulls from data, it can't pull from experience.

That space? That's yours.

For me, that space has always been the patient.

In everything I write, speak, or create was the patient stays front and center.

Not as a statistic.

As a person.

Because patient-centric medicine doesn't happen on its own.

It needs human voices behind it. Loud ones! That's why it is important to me.

So I'll leave you with this 👇

Do you think someone else can transfer YOUR experience, or are you ready to take center stage?

🔔 Drop your thoughts in the comments or slide into my DMs. I'd love to hear where you stand. 🎤
Thank you for coming to the book launch at the Club Reset and for the amazing photos .lilit 📸

12/06/2026

Patients with rare diseases have always been advocates by necessity.

They gather information, push for recognition, translate clinical language for each other, and fill gaps that systems have not yet addressed.

In the latest blog post, you can find some insights from the European Conference on Rare Diseases and Orphan Products, held in Prague, Czech Republic. This conference, organised by EURORDIS-Rare Diseases Europe and co-organised by Orphanet , gathered patient advocates and representatives from not only Europe but worldwide.

🔔 So, I am interested in your impressions and conclusions, let me know what you brought with you after the conference?
You can read the whole blog post here >>> https://www.empoweraconsulting.com/blog/notes-from-prague-ecrd-2026-research-patients
P.S. Thank you, Petr Hoffelner , for the amazing photos!

04/05/2026

If you are attending the European Medical Writers Association (EMWA) Conference in Barcelona, I would like to know your perspective on a question referred to regulatory science:
📚Where and why does the patient voice belong in regulatory documents?
I will be presenting insights on this topic on Wednesday from 9 AM and would value your feedback.
I`ve also invited EUPATI Fellows (thank you, Stefania, Sheila, and Ghada ✨), featured in the carousel below, to share their views, reflecting the ideas of thinking currently shaping this conversation.
🔔 If you are in Barcelona over the coming days and have a perspective on patient-centred drug development or health innovation, I would love you to share it: in the comments, by direct message, or in person.
Looking forward to meeting you!

29/04/2026

📢 Dear friends, I need your help!
I am currently exploring potential host institutions for a short-term faculty research stay (2 to 10 weeks) within the International Visegrad Fund / Fellowship Programme.

I am a PhD student at the University of Novi Sad, Serbia, and my research focuses on family dynamics in the context of rare disease diagnoses.

For this fellowship, I would like to propose a short-term research stay focused on:
💡 family relationships in the context of rare diseases;
💡 conflict and solidarity within families;
💡 caregiving roles and responsibilities;
💡 Social support mechanisms for families affected by rare diseases.

The aim is to further develop a comparative sociological perspective relevant to both Serbia and the V4 region:
🔸 Slovakia,
🔸Hungary,
🔸Czechia, and/or
🔸Poland.

The host institution should be aligned with the nature of the fellowship.
This may include a university, research institute, science academy, library, archive, or another relevant academic or research body.
I will obtain a formal recommendation from my faculty.
At this stage, I am seeking suggestions and recommendations on institutions, departments, research groups, or individual researchers whose work may be relevant to this topic.
If you are affiliated with an institution that may be interested in hosting a short-term research stay, or if you can recommend a contact person, I would be grateful to hear from you.

🔔 Please feel free to contact me directly by email or DM.

Address

Novi Sad

Website

https://rareandshare.net/ana-pataki/

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