Activity Report of the NGO “All-Ukrainian Association for Assistance to Patients with Cystic Fibrosis”

In the context of ongoing challenges faced by our country and the healthcare system of Ukraine, the Association continues to fulfill its mission: to provide support to patients and healthcare professionals, to contribute to improving the quality of medical care, and to represent the interests of the field in cooperation with government authorities, international organizations, and partner institutions.

The report contains information on implemented and planned projects, conducted events, regulatory initiatives, results of cooperation with профильні institutions, and the implementation of the communication strategy plans.

We invite you to review the report of the President of the NGO “All-Ukrainian Association for Assistance to Patients with Cystic Fibrosis,” Larysa Voloshyna:

“Dear doctors, colleagues, people living with cystic fibrosis, and everyone involved in CF!

I am sharing a concise but meaningful report on the work carried out and the key areas of activity during the first months of this year.

I. International cooperation and equipment provision

International support

During the two winter months, a number of strategically important meetings were held, directly influencing the further development of care for patients with CF.

January – transfer of humanitarian aid received from Germany and Austria to two cities that provide care for patients from across Ukraine: Lviv, for a severely ill girl from the Ivano-Frankivsk region, and Kyiv (18+).

A meeting was held at the National Children’s Specialized Hospital “Okhmatdyt” with the leadership of the Orphan Center and doctors to develop a communication framework with an American company that, through an international fund, provides uninterrupted and lifelong therapy support for patients in Ukraine.

According to the company’s conditions, its name and the name of the drug are currently not subject to public disclosure.

Patients from all over Ukraine will be able to receive therapy in Lviv and Kyiv without obstacles or concerns in the future.

PARI Boy inhalers

Communication was carried out with Medgarant LLC and the State Service of Ukraine on Medicines, jointly with Board member Maryna Kravchuk.

The response received is unsatisfactory:

• Medgarant LLC does not plan to procure PARI Boy inhalers.
• According to the State Service of Ukraine on Medicines, there is no data in the Register regarding PARI GmbH inhalers (nebulizers), consumables, and kits.

Therefore, at present, obtaining these devices is only possible through:

• self-purchase,
• charitable foundations,
• grants,
• humanitarian aid.

We continue to work on finding a systemic solution.

II. Provision of pancreatin (Creon)

Ensuring enzyme therapy remains a fundamental need for every patient with CF.

Within the additional procurement of 2025 and in accordance with Distribution Order No. 308-R dated 26.02.2026, during March the following will be delivered to all regions of Ukraine:

Total quantity:

• Creon 10,000 — 216,000 capsules
• Creon 25,000 — 1,186,300 capsules

The next delivery within additional procurements is planned for May:

• Creon 10,000 — 13,275 capsules
• Creon 25,000 — 718,250 capsules

Supply funded by the 2026 state budget is also expected (approximately April–May 2026).

III. Nationwide online conference of physicians (12.02.2026)

An online conference with doctors from all regions of Ukraine was held. The following issues were addressed:

• submissions to the Ministry of Health of Ukraine for 2026
• targeted therapy: key aspects of application
• inhaled tobramycin: clinical and organizational aspects
• cystic fibrosis treatment protocol
• twinning project
• open discussion and other issues

IV. Requests to military administrations

The Board, represented by Maryna Kravchuk, sent requests to all military administrations regarding:

• provision of care for patients with cystic fibrosis,
• the presence or absence of relevant regional programs.

V. Communication strategy

The Board of the Association, represented by Volodymyr Shvachko, is working on:

• the concept of transition and structuring of information in Telegram,
• analytics,
• maintenance and content support of the Association’s website.

VI. Conference for Rare Disease Day (27.02)

During the Rare Disease Day event, the story of an adult patient, Mariichka, was presented.

A complex but fundamental issue was also publicly raised:

How can patients obtain inhaled tobramycin if:

• the drug is included in the standard of treatment,
• but there is no positive health technology assessment (HTA),

At the same time, the Law on Rare Diseases guarantees provision.

The issue of responsibility for inaction and the lack of actual access to the drug for patients remains open.

VII. DEKAs multivitamins

All aspects of providing patients with DEKAs multivitamins are being addressed.

Several meetings were held with officials at various levels and deputies of the city of Kyiv. We hope for a positive decision that can be scaled across Ukraine.

VIII. Zoom meeting (02.03.2026)

Another online meeting with doctors was held regarding submissions to the Ministry of Health of Ukraine for 2026:

• regional comments were presented,
• shortcomings were addressed,
• required volumes were clarified.

IX. From March 5 to 7, 2026, the 13th South Eastern European Cystic Fibrosis Conference (SEEC 2026) took place in Tbilisi, Georgia.

Ukraine was represented by doctors from the Zaporizhzhia and Lviv regions:

Tetiana Ivanivna Okul
Halyna Vasylivna Makukh
Olena Ivanivna Vashchuk

X. Patient support

In March, the NGO “All-Ukrainian Association for Assistance to Patients with Cystic Fibrosis,” within a grant project, ensured the procurement of inhalation equipment for patients.

In particular, the following were purchased:

• 3 PARI inhalers for children aged 3–8;
• 8 PARI inhalers for patients aged 8 and older.

The purchased equipment will contribute to ensuring continuous and effective therapy for patients.

I sincerely thank the Armed Forces of Ukraine and the members of my family for the opportunity to work, live in Ukraine, and for Ukrainians.