Ana Pataki is a proud parent of two boys, one of whom was diagnosed with rare paediatric cancer. Ana has been advocating for rare and malignant diseases in Serbia ever since his diagnosis.
Believing patient engagement is the crucial bridge between patients and healthcare professionals which can lead to effective change, Ana enrolled in Cohort 7 of the EUPATI Patient Expert Training Programme. Before she embarked on the training, she had hoped to meet others with shared experiences, engage in practical exercises and hoped to gain a deeper knowledge of the medicines research and development landscape. Let’s find out how her experience was and if it met her expectations.
Could you share your story and your journey in patient engagement?
My journey began in 2017 when my younger son was diagnosed with Langerhans cell Histiocytosis.
Two years later, after completing his treatment, we could finally go home. It was then that I realized our story was part of the 5% who had the best possible outcome. We were fortunate to have open communication with his healthcare team, strong support from family and a dedicated group of parents and caregivers (NURDOR).
I had already been advocating for my son without fully realizing it. Afterwards, my husband and I got more involved. He published a book, with a part of proceeds going to the hospital that had been our second home for almost two years.
I began connecting with other parents and joined advocacy groups, spending all my free time creating content about our experience. Over the past four years, I’ve been actively involved with the National Organization for Rare Diseases in Serbia (NORBS).
Why did you enroll in the EUPATI Patient Expert Training Programme?
Though I had experience with patient advocacy, I wanted to deepen my knowledge. I needed solid arguments for advocating for others, particularly when engaging with healthcare professionals and decision-makers. With an interest in medicine development and patient engagement, I wanted to learn about the pharmaceutical industry, regulations, and health technology. I hoped to use this knowledge to contribute to the EUPATI community.
What were your expectations of this training?
I expected to learn more about patient advocacy topics, but I didn’t anticipate how valuable the experience would be. Not only did I gain practical knowledge, but I also built lasting relationships with fellow participants. We continue to stay in touch, sharing our progress and goals. This training has been an excellent foundation for future collaborations and expanding our networks.
As part of the latest cohort to graduate, cohort 7, did you feel like you were connected and supported throughout the training?
Absolutely. I felt supported by my colleagues from the start of the online sessions to graduation in Madrid in October 2024. Many of us shared similar backgrounds, including coming from non-EU countries and facing long diagnostic journeys. We learned from each other and supported one another through the process.
What were the highlights for you from this training?
One of the biggest highlights was meeting around 90 patient advocates worldwide, each with unique stories and expertise. The organization of the event was impeccable. The training covered crucial topics such as:
- medicine research and development,
- critical thinking,
- patient involvement in clinical studies, and
- creating good lay summaries.
Since my advocacy focuses on communication, I was particularly excited to learn more about this, and I walked away with valuable insights for my future work.
Any advice for people thinking of taking this training?
I encourage anyone considering this training to dive in with an open mind. Be ready to absorb everything, collaborate freely, and connect with fellow participants. Share your questions and challenges with others—this is a supportive environment, and you’ll gain a lot from those connections.
What’s next for your patient engagement journey?
I’m currently involved in several projects as a coordinator and a member of the Training Committee for Cohort 8 of Patient Expert Training. I’m also building my network on LinkedIn and collaborating with organizations in preparation for Rare Disease Day. In the future, I plan to focus more on genetic screening as prevention and initiate projects in this field. I hope my journey inspires others to apply for the next generation of EUPATI’s Patient Expert Training.
Anyone interested in connecting with me, can reach out via my social media profiles:
Date posted: February 26, 2025
Categories: Uncategorized
