10.03.2026
From March 5 to 7, 2026, the 13th South Eastern European Cystic Fibrosis Conference (SEEC 2026) took place in the picturesque Georgian city of Tbilisi. “This international event brings together healthcare professionals, researchers, patient organizations, and advocates from across Europe who specialize in cystic fibrosis to exchange knowledge, foster innovation, and strengthen regional collaboration in cystic fibrosis care and research.
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04.03.2026
In 2026, Ukrainian rapper alyona alyona became an ambassador for patients with rare diseases in Ukraine. This is not the first time the singer has shown such sincerity and courage in speaking about the challenges faced by a specific group of people. Five years ago, alyona alyona had already become a voice for patients with rare diseases. We are truly grateful to once again receive genuine support for the patient community.
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02.03.2026
The last day of February marks International Rare Disease Day. On February 27, the conference “Beyond the Possible” took place, dedicated to people who live every day with rare diagnoses. The symbol of this day was the zebra — and not by chance. In medicine, there is a well-known saying: “When you hear hoofbeats, think horses, not zebras.” In other words, look for the simplest explanation. But there are people for whom the zebra is not a metaphor — it is reality. It is life with a rare diagnosis.
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02.12.2025
I write these words with a trembling heart and immense gratitude. Our conference has concluded — and I feel not just fatigue or relief. I feel pride. Strength. Unity. And an incredible belief that what we are doing is the right thing. These two days have proven to me: we are not just an organization. We are a family. A family that fights, that does not give up, that supports each other even when strength is almost gone. As the President of the All-Ukrainian Cystic Fibrosis Association, I want to thank everyone who poured their heart into this event.
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21.11.2025
The All-Ukrainian Association for Assistance to Patients with Cystic Fibrosis supports individuals with the rare (orphan) disease cystic fibrosis throughout Ukraine. November is Cystic Fibrosis Awareness Month, and November 21 is recognized in the countries of the European Union as Cystic Fibrosis Day — a day dedicated to this rare disease. As members of the European community CF Europe, we are joining the international initiative and organizing a scientific and practical conference
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13.11.2025
The “Breath of Power” Project — together we make breathing easier! At the end of the summer, we received good news from the “Orphaned Tits” Charity Foundation — our Association became one of the winners of the subgrant. As part of the implementation of the “Breath of Power” grant agreement, the necessary equipment for inhalation therapy was purchased...
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13.11.2025
Dietitians of the Center for Orphan Diseases and Gene Therapy (OKHMATDYT, Kyiv) held an online seminar on nutritional support for patients with cystic fibrosis. The lecture was useful for different patients: both for those receiving targeted therapy and those who are treated symptomatically. We thank the doctors for the informative information and answers to questions.
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29.10.2025
For two days we work and exchange experience between the frontline territories of Ukraine. The conference was made possible thanks to the active cooperation between Ukraine and Israel, the participation of Professor Malena and the team, Katarina, President of the Slovak Association, President of the NGO "All-Ukrainian Association for Helping Cystic Fibrosis Patients" Larisa Voloshyna, as well as with the support of the director of the Matiu Pahom Foundation, Pavlo.
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22.10.2025
In August, the All-Ukrainian Association for Helping Cystic Fibrosis Patients submitted the project “Breath of Strength” to the Orphaned Tittys Charity Foundation. Following the results of a competitive selection, in which more than 30 organizations participated, our association was selected among the winners.
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02.10.2025
The implementation of the patient support project in Ukraine is ongoing, made possible by our European partners CF Europe. Their help for us is not just funding, but true solidarity and belief that together we can make the lives of people with cystic fibrosis better.
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28.08.2025
To mark International Cystic Fibrosis Day, which is celebrated annually on September 8 worldwide, we are preparing to hold the Scientific and Practical Conference "Cystic Fibrosis and War: Challenges, Experience, Support". The purpose of the conference is to unite specialists, patients and their families to find effective solutions in the treatment, provision of therapy and support for people with cystic fibrosis in wartime. The main goal is to teach patients and their families to defend their legal rights to receive modern therapy and treatment, as well as provide practical tools for interaction with the medical system, government agencies and international organizations.
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19.06.2025
The 48th Annual Congress of the European Cystic Fibrosis Society — ECFS 2025 has ended.
A number of important issues were discussed at the meeting with representatives of patient organizations:
1. Membership fees — they will be differentiated depending on the economic situation of the countries. For Ukraine, the amount of 125 euros has been preliminarily determined, however, we will continue negotiations with the ECFS leadership, because our country is in a state of war...
06.06.2025
Dear Society! From June 2 to 7, the 48th European Congress on Cystic Fibrosis (ECFS 2025) will be held in Italy.
This year, the Ukrainian delegation includes doctors and scientists from Kyiv, Lviv, Vinnytsia and Zaporizhia.
From the patient community, the following are present:
• Larisa Voloshyna - President of the All-Ukrainian Association for the Assistance of Patients with Cystic Fibrosis
• Lesya Moroz - Chair of the Supervisory Board of the Association, representative of the CAB (Community Advisory Board) In 2023, I was awarded the Patient Advocate of the Year 2023 award. I sincerely thank my international colleagues and partners for the high assessment of our activities in Ukraine and for patients in Ukraine during 2022 - early 2023.
03.04.2025
During the military aggression by Russia, Ukrainian patients with cystic fibrosis are in dire need of treatment in modern and comfortable children's hospitals with professional staff, accurate diagnostics, timely assistance, and the latest equipment. In a difficult moment for our country, charitable foundations come to the rescue.
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11.03.2025
March 15-16, 2025, Kyiv, the symposium "Modern Paradigm of Nutritional Management - the Path to the Art of Healing" will be held in online and offline format One of the speakers is Oksana Volodymyrivna Soldatova. Candidate of Medical Sciences, Associate Professor of the Department of Pediatrics, Pediatric Neurology and Medical Rehabilitation, P.L. Shupyk National University of Health Care of Ukraine, Expert of the Department of Health of the Kyiv City State Administration, Vice-President of the Independent Association of Nutritionists and Dietitians of Ukraine, Pediatrician of the Highest Category, Pediatric Gastroenterologist, Dietitian.
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28.02.2025
Dear patients, doctors, scientists, today, on Rare Disease Day, we invite you to join the conference dedicated to this day.
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14.02.2025
The last day of February is the International Day of Orphan Diseases. On this date, the world community tries to draw public attention to the problems of such patients. The Public Union "Orphan Diseases of Ukraine" invites you to participate in the panel discussion "WE DO MORE THAN IT SEEMS POSSIBLE", which will be held on February 28, 2025 in Kyiv in a mixed format (offline + online).
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02.12.2024
On November 29-30, the annual Scientific and Practical Conference dedicated to the European Cystic Fibrosis Day “Life with Cystic Fibrosis during War” was held in Lviv. The conference was attended by the Heads of regional centers of Ukraine and their deputies, representatives of the board of the NGO “All-Ukrainian Association for Helping Patients with Cystic Fibrosis”, doctors who treat adult and pediatric patients from Ukraine.
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07.11.2024
Already this month, the conference "CF Conference Kraków" will be held in Poland, which will be devoted to important topics related to the disease, as well as the "Twinning" project. The Ukrainian regions will continue and start adopting the experience of other countries: Zaporizhia, Kyiv, Lviv, Ivano-Frankivsk, and Vinnytsia. In addition, it is important to note that many doctors from all over Ukraine will be present at the conference. Namely from the cities: Lutsk, Odesa, Rivne, Kryvyi Rih, Mukachevo, Khmelnytskyi, Kharkiv. It is no less important that for the first time, in addition to the board of the All-Ukrainian Association for the Aid of Cystic Fibrosis patients, the conference will be attended by representatives of the patient community, heads of centers in which the "Twinning" project has been implemented: Budnyk Tetyana (Vinnytsia region), Solodovnyk Olena (Zaporizhia region ), Natalia Kashchuk (Ivano-Frankivsk region), Olesya Moroz (Lviv region). We are attaching the full program of the event in Krakow.
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24.10.2024
As part of the continuation of the initiative from the NGO "All-Ukrainian Association for Helping Patients with Cystic Fibrosis", on October 25, the second webinar on supporting the mental health of patients and their relatives will be held. This time we will talk about the topic "Psychological features of adolescence. Personality typology, opportunities for constructive communication." Psychologist Ivanova Olena - PhD (Doctor of Philosophy) in psychology, senior lecturer of the Department of Practical Psychology of ONMU (Odesa National Maritime University), system arranger, art therapist, laughter therapist, volunteer at WARTOZHYT hotline for military personnel and their relatives.
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16.10.2024
The other day, our NGO "All-Ukrainian Association for Helping Cystic Fibrosis Patients" conducted a survey on the psychological difficulties faced by patients and their relatives. Taking into account the difficulties of today, when everyone is faced not only with the problems of availability of medicines, lack of doctors, but also with constant emotional stress, a decision was made to support the mental state of our patients and their families. Based on the answers, a list of problematic topics has been prepared, on which psychologists will conduct webinars for patients and parents.
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13.09.2024
On September 10, an online broadcast of a scientific and practical conference dedicated to the International Cystic Fibrosis Day, which was celebrated on September 8, took place. The conference program was interesting both to parents of children and adult patients with cystic fibrosis, as well as to medical professionals and everyone interested in news about this disease. The main issues are presented in the description from the All-Ukrainian Association of Aid to Cystic Fibrosis patients.
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01.07.2024
On June 30, in Rivne, the “Let’s Work Together” festival was held, organized by the EU Representation in Ukraine together with the “Network of 100 Percent Life of Rivne”. The participants of the festival fully enjoyed the stylish photo zone, children’s creative and entertainment corner, interactive quests. Also, all guests had the opportunity to take part in a discussion panel on EU aid and get useful information on the avenue of public organizations. NGO “All-Ukrainian Association for Helping Patients with Cystic Fibrosis” took part as a grant recipient and partners of the “100% Life Rivne Network”.
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