In a recent meeting, Megan Webber, co-founder of KnowTheGlow (KTG), and Helene Dameris, Director of Global Outreach for KTG, had the opportunity to connect with Dr. Paulina Bartoszek, an ocular oncologist and head of the Ocular Oncology Unit at the Institut Roi Albert II (UCLouvain) in Brussels, Belgium. Helene had recently met Dr. Bartoszek at the EURBG conference in Athens, where Dr. Bartoszek presented on the Baby Detect initiative, a genetic newborn screening program for over 120 treatable diseases including retinoblastoma (RB). She emphasized the urgency of early diagnosis in RB, describing it as “a race against time,” and clarified that the initiative focuses on screening rather than diagnosis. The meeting marked a significant step towards strengthening KTG’s global outreach and enhancing early detection efforts for eye diseases like Retinoblastoma (RB).
Dr. Bartoszek, originally from Poland, often jokes that she was inspired to become a doctor by watching George Clooney on the television show ER. She initially considered pursuing a career in the hard sciences but realized that her empathetic nature and desire to help people made medicine a better fit. Since making that decision, she has never looked back. Dr. Bartoszek has two children and two dogs and often says that she couldn’t do what she does without the unwavering support of her amazing husband. Dr. Bartoszek was trained under Dr. Patrick De Potter in Brussels, who himself was mentored by Drs. Carol and Don Shields (Wills Eye Institute). Dr. Bartoszek assumed her current position eight years ago and she took over Prof De Potter’s practice 2 years ago. Fluent in English, French, Dutch and Polish, Dr. Bartoszek’s linguistic skills enhance her ability to connect with a diverse patient base.
Belgium, a country of 11 million people, sees an average of five new Retinoblastoma cases per year, all treated at a single specialized center. The country’s advanced medical infrastructure means that late presentations of the disease are rare, with most cases referred to Dr. Bartoszek’s nationally renowned clinic following early detection of leukocoria by physicians. Despite the presence of a growing optometry sector, Belgium lacks robust parent or support groups for RB patients, partly due to language barriers. Consequently, families often seek support in neighboring countries. Additionally, while health insurance is mandatory for all Belgians, government support for disease awareness campaigns remains minimal, though Dr. Bartoszek is hopeful that down the road they may support initiatives targeting a broad audience.
A key topic of discussion was Belgium’s newborn genetic testing initiative aimed at early detection and treatment of rare but serious infantile diseases, developed at the Citadelle and the CHU of Liège. This initiative began with newborn testing for spinal muscular atrophy due to the availability of new treatment that can halt disease progression or even stop it from developing if given before symptoms appear. Dr. Bartoszek advocates for the inclusion of RB and other genetic eye disorders in this national testing program. Over the last two years, the Baby Detect team has been gathering data on genetic testing for over 120 diseases, with the goal of submitting their findings next year to support making genetic testing a national standard. This is particularly important for the future RB patients as 40% of RB cases are hereditary .
Megan and Helene had an immediate sense of admiration for Dr. Bartoszek, given her dedication and impressive work in ocular oncology. Together, they discussed various next steps, with a shared vision of spearheading an awareness campaign in Belgium that could potentially spread to other European countries. With a united commitment to advancing early detection and support for RB patients, and through their combined efforts and ongoing collaboration, Dr. Bartoszek and KTG are poised to make significant strides in raising awareness and improving outcomes for children with RB and other eye disorders.
