On February 28, World Rare Disease Day, rare diseases are the focus of our attention.
Why is this an issue that affects us all?
In Poland, this issue affects approximately 2–3 million people. This number clearly shows that while individual rare diseases are rare, as a group of patients, these individuals represent a significant portion of the population. “Rare” does not mean “insignificant.”
It is therefore essential to raise public and medical awareness of the challenges faced by people living with rare diseases and their loved ones.
2026 – Year of Health Prevention
The year 2026 has been declared the Year of Health Prevention on the initiative of Monika Wielichowska. This direction is fully in line with the mission of the OliEdu Foundation.
During a meeting in the Sejm of the Republic of Poland, Ewa Daros, President of the OliEdu Foundation, took the floor. In her speech, she emphasized that the future of the healthcare system should be based on prevention, education, and a tangible increase in access to modern diagnostic methods—including genetic testing.
Prevention is not a cost—it is an investment in public health and in reducing tragedies that can often be prevented.
Our role as a foundation is: education, awareness, empathy
We strive for real change, which is why in the area of health:
- we conduct educational activities,
- we provide reliable information,
- and foster social awareness and empathy.
We reach out to various groups—youth, adults, prospective parents, and decision-makers—because we believe that everyone has the right to information, diagnosis, and treatment on an equal basis.
We place special emphasis on the importance of genetic testing in family planning. We aim to raise awareness of the challenges faced by individuals who are carriers of genetic mutations. Early identification of risk allows for informed decision-making, the implementation of appropriate treatment, and—in many cases—the prevention of serious complications.
Modern Possibilities and Real Barriers
One solution that offers families the chance for safe parenthood is in vitro fertilization (IVF) with preimplantation genetic testing for monogenic disorders (PGT-M). It helps reduce the risk of passing on serious genetic diseases to future generations and allows families to make responsible decisions based on medical knowledge.
Unfortunately, the high cost of this procedure means that for many families, it remains financially out of reach.
The lack of reimbursement exacerbates inequalities in access to modern medicine and forces prospective parents to make a heart-wrenching choice—between health risks for their child and giving up their dreams of parenthood.
The 5 key benefits of embryo screening for rare genetic diseases (as part of the PGT-M procedure) are:
- Reduced risk of passing the disease on to the child
Enables the identification of embryos free of a specific genetic mutation. - Informed and responsible parenthood
It gives prospective parents the opportunity to make decisions based on medical knowledge and actual genetic data. - Reducing family suffering
It helps avoid dramatic situations. - Psychological support for parents who are carriers of the mutation
People aware of their genetic predisposition gain a practical tool to reduce anxiety related to family planning. - Long-term health and social benefits
Prevention at the family planning stage can reduce future costs of treatment, hospitalization, and specialized care, while improving the quality of life for future generations.
As a foundation and as parents, we believe that people affected by genetic diseases should not make decisions solely under economic pressure. A healthcare system based on social solidarity should guarantee equal access to solutions that prevent suffering and improve the quality of life for future generations.
The right to informed, safe parenthood cannot be a privilege—it should become the standard.
On Rare Disease Day, we remind everyone that prevention, education, and responsible health policies have a real impact on the lives of millions of people. The year 2026 will be a time of even more intensive action for us—with the health of current and future generations in mind.
