A Roadmap for Families: Expanding Access to Down Syndrome Health Information in Ukraine

In 2024, two years after the war in Ukraine began, GLOBAL was introduced to the incredible team at the Ukrainian Down Syndrome Organization. Since then, our organizations have worked together to make trusted Down syndrome health resources available in Ukrainian. In this conversation, their team shares why access to reliable information matters and what they hope these resources will mean for families across Ukraine.


GLOBAL: Can you tell us a little about the history of the Ukrainian Down Syndrome Organization and how your work has evolved over time?

UKRAINIAN DOWN SYNDROME ORGANIZATION: Our organization was founded in 2003 by parents who had children with Down syndrome and who strived to ensure a better future for their children. Over these years, we have supported more than 2000 families and have grown from a small support group into a professional structure with over 20 people involved in implementing systemic changes: from early childhood development and inclusive education to building communities and providing professional support to families across the country.

 

GLOBAL: Why is it important to have trusted Down syndrome health information available in Ukrainian?

UKRAINIAN DOWN SYNDROME ORGANIZATION: For a long time in Ukraine, there was a lack of high-quality medical knowledge adapted for parents and professionals. Reliable information in Ukrainian is not just facts; it is a tool to overcome stigma, better understand individual needs, and ensure the right to a quality life and health.

 

GLOBAL: What do you hope these resources will mean for people with Down syndrome, their families, and health care providers in Ukraine?

UKRAINIAN DOWN SYNDROME ORGANIZATION: For families, these materials serve as a “roadmap” that provides confidence and reduces the fear of the unknown. For medical professionals, they offer an opportunity to rely on modern global protocols, which fundamentally changes the quality of care a child receives from the very first days of life.

 

GLOBAL: Is there anything you would like people outside of Ukraine to know about your organization or the Down syndrome community in Ukraine right now?

UKRAINIAN DOWN SYNDROME ORGANIZATION: We want people outside of Ukraine to know that the Ukrainian community of families raising children and adults with Down syndrome consists of incredibly resilient, talented, and caring people. Despite all the challenges, we continue to develop, build an inclusive environment, and believe in the power of partnership. We are not just “surviving.” We are living, learning, and striving to make the world equal for everyone.

 

GLOBAL: If you are comfortable sharing, how has the war changed the needs of people with Down syndrome and their families in Ukraine, or made access to trusted health information more important?

UKRAINIAN DOWN SYNDROME ORGANIZATION: The war has made access to information a vital necessity. Due to forced displacement, thousands of families found themselves in new circumstances, often without access to their regular doctors. In such conditions, professional online resources become the only source of help, allowing parents to monitor their child’s health independently and make informed decisions in critical situations. Furthermore, there is a great demand for psychological/psychiatric care specifically tailored to people with Down syndrome. However, specialists-psychiatrists, psychologists, and neurologists – with specific expertise are very few. We are grateful for your sharing of experience today and in the future.

 

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