Page 24 - SRPSKO DRUŠTVO ISTRAŽIVAČA RAKA

Serbian Association for Cancer Research SDIRSACR

3.1. Professional Choices

I aligned my professional choices with the value system I built through personal experience and further specialization
in the field of patient advocacy.
Aware that many parents today are faced with a diagnosis of paediatric cancer or a rare disease for their child, often
with their minds overwhelmed by questions, I set my priorities around finding answers I could offer as clear guidance,
with the aim of helping others navigate this journey by providing concrete, relevant information that could lead more
quickly to a diagnosis or potentially available treatment for specific diagnosis.
Through communication with healthcare professionals from various specialties, it became clear that the more
experience and case studies they have, the faster they can respond in terms of establishing a diagnosis, directing
patients toward the right answers, and reacting efficiently when administering treatment.
That is why I believe in the “power of communication”, as science and technology progress, access to information has
become easier and faster. However, with the development of clinical trials, the flow of information can sometimes
become overwhelming. For this reason, clear and precise guidelines in the context of diagnosing and treating rare
diseases are essential.
By sharing experiences between doctors, patients can often receive a diagnosis in a shorter timeframe, based on
clinical practice. At the same time, researchers involved in clinical studies can use this information to find more accurate
solutions for various gene mutation variants treatments that cause rare diseases or enzyme deficiencies, addressed
through gene therapies or medications developed in such clinical studies.
In collaboration with associations representing patients with rare diseases, I am currently working on activities such as:
ͳ awareness-raising campaigns,
ͳ development and implementation of communication strategies,
ͳ organizing events that connect patients, and
ͳ organizing continuing medical education for healthcare professionals from various specialties related to rare
diseases.
My motivation to learn more about rare diseases, as well as about ways to accelerate diagnosis and shorten the time
to treatment, grew out of the desire to never again feel the helplessness that overwhelmed me when I first heard my
child’s diagnosis.
I learned out of a need to “arm myself” with knowledge, to master the terminology used, even without prior medical
educationand to apply the skills I do possess when presenting the daily challenges faced by patients diagnosed with
rare diseases.
These educational experiences have taken me to different places that were previously out of my reach, whether in terms
of geography or in terms of connections I have established with representatives from other rare disease organizations.
The result of this exchange of knowledge are regional alliances and collaboration on joint projects over the years.
I have made all the knowledge and skills I have acquired available to anyone with the questions, so that together we
can work toward a diagnosis, treatment, or solution to the situation they find themselves in. My reward is to help every
family that reaches out for help, directing them to the right address or connect them with doctors of a certain specialty
who can provide adequate health care.

3.2. How the Podcast “Rare and Share” Was Created

After appearing on the national television program “Mesto za nas” (A Place for Us), and following the strong public
reaction and the large number of messages we received from parents, we realized that there was a lack of public
platforms where experiences could be shared in a way that empowers parents to ask questions. There was a lack of
means to convey the experience in a simple, comprehensible language.
For the past three years, I have been creating content for the podcast “Rare and Share,” which we created to share
personal stories of patients with rare diseases and of parents who, in their search for therapies or by lobbying for the
amendment and passing of the law, quite literally “moved mountains” for their children.
We’ve had the opportunity to speak with professionals who shared, from their perspectives experiences and advice on
how to improve the quality of life for patients.

In the field of oncology, some of our guests were:
ͳ Irina Ban, “Zvončica”: A devoted mother with over 30 years of experience in creating a safe environment for
children undergoing cancer treatment and their parents. In cooperation with doctors and with knowledge gained
in the field of paediatric cancer patient rights, “Zvončica” – the Association of Parents of Children with Malignant
and Other Rare Diseases was founded in 1992. That same year, the first parental house near the Institute for
Mother and Child Healthcare “Dr Vukan Čupić,” was opened and still operates today near the Institute. Irina

9