Page 22 - SRPSKO DRUŠTVO ISTRAŽIVAČA RAKA

PATIENT POINT OF VIEW

Ana Pataki is a patient advocate specializing in rare diseases and pediatric
cancers. She holds a Bachelor’s and a Master’s degree in Sociology from
the University of Novi Sad.
Ana’s advocacy journey began following her younger son’s diagnosis and
successful treatment for pediatric cancer, which inspired her to engage
more in the field of patient support and empowerment.
Since then, she has completed the EURORDIS Winter School on Scientific
Innovation and Translational Research and is a certified EUPATI Fellow
Patient Expert from Cohort 7.
Ana is currently serving as a member of the Organizing Committee for the
European Patient Training Academy, contributing to the development of
the next generation of patient experts.

Manuscript received on: July 22, 2025. 616-006.04-053.2:159.9
Manuscript revised on: July 23, 2025.
Manuscript accepted on: July 26, 2025.

Advocating for Hope, Access, and Future in Rare and Paediatric Cancer Patients

1.1. Personal Motivation

At the very beginning of my journey as a patient rights advocate, I was “just” a mom. My son was diagnosed with
Langerhans Cell Histiocytosis in 2017, and he completed his treatment in mid-2019.
Throughout that journey, we had valuable communication with his doctors, who answered all of our questions
regarding symptoms, support, the course of treatment between chemotherapy cycles, and how to strengthen his
immune system during therapy.
This experience was quite intense and frightening for us at the time, but we could not envision any other scenario than
the one that led to a positive treatment outcome. Our fight ended in victory.
At the very end of treatment at the Institute for Child and Youth Health Care Vojvodina, Paediatric Clinic in Novi Sad,
we returned to our “new normal”—but nothing was the same, nor did it feel normal anymore.

An important part of our journey was communication and support:
ͳ First and foremost, communication with doctors, who guided us through every step - from the initial diagnosis,
through explanations of the treatment protocol, side effects, and the risks that might arise. Every step was
communicated in advance, with continuous check-ins to address questions and doubts during treatment. Our path
to recovery lasted about two years, with regular hospital visits, home blood monitoring, maintenance therapy that
lasted for a while, and annual check-ups coordinated with the attending physicians.
ͳ The psychological support we received during treatment. This occurred once a week through a program called
“A Cup of Conversation,” organized by the National Association of Parents of Children with Cancer “NURDOR”.
Psychologists on the ward hosted weekly group sessions for parents and guardians, giving everyone space to ask

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