Rare does not mean invisible: Orphan Disease Day
28.02.2026
Events
Every year on the last day of February, the world celebrates Rare Disease Day.
Today, there are over 7,000 known rare diseases. Hundreds of millions of people around the world live with them. In Ukraine, there are thousands of children and adults who face not only medical challenges every day, but also barriers to access to treatment, rehabilitation, education, employment and social services.
Rare does not mean invisible.
Rare does not mean less important.
People with orphan diseases critically need:
- timely and accurate diagnosis;
- guaranteed access to medicines and state treatment programmes;
- multidisciplinary medical care;
- rehabilitation and psychological support;
- a barrier-free environment in communities.
LAOPD consistently advocates the principle that public policy should take into account the needs of every person, regardless of the prevalence of their diagnosis.
The issue of orphan diseases is part of the broader theme of accessibility, availability of medical services, and social justice.
Today, we express our solidarity with families, patient organisations, doctors, and specialists who fight every day for the quality of life of people with rare diseases.
We call on the authorities to:
- ensure stable funding for treatment programmes;
- expand neonatal and other screening programmes;
- introduce modern diagnostic and treatment protocols;
- develop systematic support for patients and their families.
Because accessibility is not just about ramps.
It is about equal access to life, treatment and the future.
News and events
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Early support - timely assistance
The Ministry of Health of Ukraine has approved a clear procedure for follow-up observation of newborns and children under 4 years of age who are at risk of developing chronic diseases. Simply put, Ukraine now has uniform rules for the care of children who require special attention from the first months of life. What does the new Procedure define? Who exactly is subject to systematic medical observation How often examinations should take place What areas of development are assessed — motor skills, speech, cognitive skills, emotional state, social adaptation How parents are informed and what recommendations they should receive The main idea is to identify potential difficulties as early as possible and provide timely assistance: doctors, rehabilitation services, early intervention services. The document was developed by the Ministry of Health in cooperation with the Advisor to the President of Ukraine on Children's Rights and Rehabilitation as part of the barrier-free strategy initiated by Olena Zelenska. For LAOPD, this is another important step towards systemic accessibility. Because accessibility is not just about ramps and transport. It is when a child receives support from the first months of life and the family is not left alone to face challenges.
04.03.2026
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News
A fully accessible swimming pool has opened in Lviv
A fully accessible 25-metre swimming pool has opened in Lviv — a space where accessibility is not just a declaration, but a reality. Its main feature is a special remote-controlled lift. People who use wheelchairs can get into the water and back out again independently. Without outside help. Without awkward requests. Without barriers. What has been implemented: a ramp and fully accessible entrance have been installed; showers, changing rooms and toilets have been renovated to meet the needs of people with reduced mobility; separate rooms have been provided for wheelchair users. The city allocated 8 million hryvnias in subsidies to create this space. First and foremost, the pool will be used for the rehabilitation of veterans. At the same time, it is open to city residents and schoolchildren. And this is fundamental. Because accessibility is not ‘separate for someone.’ It is equal access for all. Registration : 097 498 86 59 or at the reception desk of the complex. For veterans and family members of fallen heroes : 099 43 63 465. Photo: Roman Baluk
03.03.2026
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News
Ivan Artyukh — four gold medals at international competitions
Ivan Artyukh, a veteran from Luhansk region, won four gold medals at the Air Force and Marine Corps Trials, an international competition for veterans held in the United States. He achieved this in all disciplines in which he participated. This is a source of great pride. And a powerful example for everyone. Ivan is a veteran who has gone from the front lines to the international sports arena. Before the full-scale invasion, he worked as a police investigator. With the start of the war, he joined the ranks of the combat units: the Luhansk direction, the Kharkiv counteroffensive, the battles for Lyman and Bakhmut. After a serious injury, he underwent a long rehabilitation and completed his service. Today, Ivan works as a lawyer and continues to be active in sports. At the competition in the United States, he won gold in four swimming events: 100 m freestyle 50 m freestyle 50 m backstroke 50 m breaststroke These are not just medals. They are a symbol of strength of spirit, endurance and perseverance. They are proof that sport can be part of recovery and a new phase of life after war. Ivan plans to continue competing, particularly in cycling, rowing and sitting volleyball. His story is about moving forward. About believing in yourself. About the fact that after the most difficult trials, you can win again — and inspire others not to give up.
02.03.2026
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