What began as her family’s journey through our younger son’s rare pediatric cancer diagnosis became Ana’s path into patient advocacy, where she learned how critical informed, confident advocacy is for families facing serious illness.
Ana Pataki is a PhD student in sociology and a patient advocate focused on rare diseases and pediatric cancers. A decade ago, she was a mother learning to navigate her son’s life-threatening diagnosis. Today, as a Faculty Committee member of EUPATI, she supports and mentors new generations of patient experts, promoting informed and effective patient involvement. Ana is living with her family and working from Novi Sad, Serbia.
Transcript
This all started the day we heard the words, “This is better than the best‑case scenario. You can go back to your life.” And I realized I no longer knew what our life meant. Because for almost two years, we lived in hospital, separated from my husband and older son, focused entirely on helping our younger boy, Victor, to recover. Everything else stopped.
And how it started? Well, In November 2017, Victor was diagnosed with Langerhans cell Histiocytosis. His treatment lasted nearly two years and included chemotherapy followed by long periods of waiting for his immune system to recover before the next phase could begin.
Like many parents, I was suddenly thrown into a world I didn't understand. I had no medical background, yet I needed to make sense of complex terminology, treatment plans, and decisions that affected my child's life.
So how did I step into learning medicine language? One moment from the early days still stands out, because a nurse asked me to measure Victor's diuresis. I didn't even know what the word meant. If another mother in the next room hadn't stepped in to explain, I wouldn't have known how to help my own child. Because with the goal of transparent communication, diuresis is the measurement of the amount of liquid the patient expels through urine or stool due to retention. If this isn't happening, patients would have to take medicines that cause this process, and those are diuretics.
That moment saved me, because I realized how easily families can get lost, not because they aren't capable but because no one is translating the language for them. So I started doing that translation myself, slowly, carefully, and with purpose. I began researching how patients and caregivers could communicate more effectively with healthcare professionals and take an active role in their own or their child's care.
So I would like to share with you a story of a tree, because outside our hospital window stood a single tree. Nothing special. Maybe a cherry or a sour cherry. And when we arrived, its branches were bare. Then the snow covered them, and later they blossomed. Finally, the first fruits appeared.
That tree showed me how time keeps moving, no matter how heavy our days felt. Even when fear and bad news filled my mind, that tree reminded me that life continues, seasons change, and new leaves always grow. So watching that tree helped me believe we would eventually walk out of that hospital and never return.
And then there was a shift in our perspective after treatment. Because when we finally returned home, I only then understood how fortunate we have been. Victor's diagnosis came relatively quickly. The treatment protocol existed. The medication was available through public health insurance. Many families facing rare diseases don't have that experience, and that realization changed everything for me.
So my husband and I, we knew we wanted to stay involved and support others who were facing even greater uncertainty. We began collaborating on conferences, supporting the development of rare disease registry, and participating in discussions with both decision makers and policymakers. What started as curiosity turned into responsibility.
So how did I find my voice through storytelling? In 2022, one friend invited us to share our story on a nationally televised program. The response surprised us because messages came from people we didn't know, thanking us for saying out loud what they were living through silently.
That experience led to the creation of the Rare and Share Podcast we've made. The goal was simple, to give patients and families a space to speak honestly and be heard. We built a small improvised studio and recorded after working hours. Guests arrived as strangers and left as something closer to friends.
We bought the equipment, light and camera, and put some plants to make it feel like a living room, so giving our future guests a relaxed and calming vibe. We also printed a small banner with the podcast's name, which stands between our guests and us during every episode. And we needed to wait after working hours to record since it was cramped and we needed the late evening hours to start.
After welcoming every guest and offering them a coffee or tea in our branded mugs, I would invest myself into our conversation so that everything else disappears. I would forget about that mic and camera and lights, and listen to the humorous stories of searching, dealing with brutal truth or facing the obstacles, and finding strength in ourselves to deal with everyday struggles.
Some of the guests, as I already mentioned, we knew beforehand, but some we met for the first time minutes before the recording. And I learned how to listen deeply, how to ask clear questions, how to hold space for these difficult truths.
So, I learned how powerful it can be when complex medical terms and topics are explained in a plain language. The podcast didn't just tell the stories, it sparked action. Conversation led to new initiatives and advocacy efforts and collaborations that continued well beyond the recordings. Just like that tree in spring, we spread news like branches, and leaves of initiatives grew with time.
So what led from experience to expertise? That was the idea that throughout this work, I became more confident in my ability to communicate across gaps between patients and clinicians and between families and researchers. I was no longer afraid to ask questions. I knew how to ask the right ones. I invested time and energy to fully understand the landscape.
So for those who are familiar with, for example, epic fantasy, this journey through the European medical landscape often reminded me of some kind of fairy tale. One young wizard chasing a powerful enemy, supported by elderly wizards, sorcerers, and creators of magic potions, working together to defeat the threat and restore life to the enchanted village.
So if my quest was to learn every spell needed to confront a rare diagnosis as the main enemy, then healthcare professionals were the wizards and sorcerers empowered by knowledge, technology, and genetics. Together, we are on a path toward answers and toward giving patients and their families hope during the diagnostic journey.
In 2021, I took my first formal step by attending an EURORDIS training focused on scientific innovation and translational research for patient representatives. That training gave me tools to better understand research and turn information into practical, usable resources for families. What began as a self‑education now became my profession.
So, how did I actually become a patient advocate? Well, trying to make a deal with my friend, in 2023, I applied for the EUPATI Patient Expert Training Program. Joining the program felt like a commitment, not just to learning but to long‑term advocacy. Over a year of intensive studies, we covered the medicine development, clinical research, and health technology assessment as topics of this education. It felt like finally learning the rules of a world I had already been thrown into, a world of wizards and dragons.
So the dragons were those big complex systems, regulation, reimbursement and clinical trials. Powerful, intimidating and dangerous if you approach them without any preparation. And the wizards were the experts, researchers, regulators and policymakers, people fluent in a language that decides who gets access to treatment and who has to wait.
Through the training, I learned how to approach both, how to ask the right questions, when to listen, and when to speak. I learned that in different countries, the dragons, so to say, behave differently, so that the wizards follow different rules. Naming those differences out loud isn't complaining. It's how you make the map more honest for everyone who comes after you.
In 2024, I left my job to be a patient advocate full‑time. I joined a patient organization supporting families affected by rare neurotransmitter diseases, and I launched my own consulting work focused on communication, strategy, and ethical storytelling in health. So it's kind of closing the circle, because one year later, I returned to the same training program, this time as a member of the faculty committee for the Patient Expert Training Program's final in‑person event.
This was the largest audience I have given a speech to, with over 100 people from more than 30 countries worldwide, representing different diseases. Standing in front of new trainees from across Europe and the whole world, I wasn't sharing theory. I was sharing a lived experience, and I was helping others to find their voice, just as I once had.
A quiet conversation over breakfast with a trainee from Finland reminded me why this work matters. On the first day of the in‑person event held in Madrid in Spain, I was presenting EUPATI Connect. That's a useful tool for fellows to connect with researchers and academia when there is a need to include patient experts in clinical studies or similar processes. So she thanked me for speaking clearly, slowly and thoughtfully, because it made the space accessible for her. She could follow the presentation because it aligned with my speech and made the importance of all the tools option clear.
In that moment, I understood how far I had come. Much like a tree in autumn bearing fruit, this phase of my work was about contribution. I expanded the network of educated and empowered experts, shared knowledge on effective patient involvement, and provided clear, practical insight into how patient advocacy functions in practice.
So, I got from caregiver to advocate, and from learner to teacher. That is the strength of patient advocacy, community, connection, and the simple powerful act of sharing knowledge.