About the project SK UA CF CARE

Cystic Fibrosis (CF) is an incurable orphan genetic disease that shortens the life of CF patients and has a big influence on daily quality of life of CF families.

This project will change the opportunities for CF patients – will give them, as the disadvantaged group, equal opportunities as their healthy friends have. It will intensify the cooperation between regions of SK and UA in case of this rare disease.

Main problems in Ivano-Frankivsk region:

  1. There are not adequate conditions for CF care and CF patients have to travel to another places in UA, where they have to pay for CF care;
  2. Lack of knowledge and awareness about this rare disease among healthcare professionals. CF families and public;
  3. Insufficient funding’s for medicines, equipment’s and tools.

Thanks to the project we:

  • will create a specialized CF Center with CF Patients Registry;
  • will train healthcare professionals from UA and SK in diagnostics, treatment, physiotherapy, nutrition and daily care for CF through workshops, training, conferences and publications;
  • will ensure medical tools and equipment for CF patient’s home care and for CF Centers;
  • will create conditions for successful lobbing and advocacy to improve the situation of CF in UA and SK to ensure better financing for appropriate care, treatment and access to new therapies.

Focusing on long term effect and sustainability in all project activities we want to achieve our overall objective to ensure higher quality of life for CF patients and their family members in Slovakia and Ukraine.

Creation of CF Centre with required medical equipment and well educated CF team in Ivano-Frankovsk Children´s Hospital means creation of adequate conditions for long- term improvement of health, social and public services for CF patients and their families.

Thanks to early and correct diagnosis we could save CF patients before premature death.

Lead Beneficiary (LB) is Slovak Cystic Fibrosis Association (CF Association) Organization was established to help people with CF in Slovakia. Slovak CF Association operates in field of education by organization of CF Conferences, in field of lobbing by “monitoring the quality of life of patients with CF in Slovakia” and in field of publishing of educational and PR books and leaflets in Slovakia. President of CF Association, MUDr. Katarina Štěpánková, has more than 25 years of experience in field of CF.

Organization has experience with cross border projects, in 2007 Slovak CF Association implemented a project from Visegrad funds and from 2012 to 2014 was the LB in ENPI CBC HUSKROUA Programme with project HUSKROUA/1001/138. Slovak CF Association will be responsible for the coordination of project on both sides, implementation of the project in SK side and monitoring.

First Beneficiary is Ivano-Frankovsk Regional Children’s Clinical Hospital (HOSPITAL), were the CF centre with trained staff will be established. The hospital will provide financial and capacitive operation of the CF centre during the implementation of the project and after that.

Second Beneficiary is RIMON – Charitable Foundation Research Innovations in Medicine. RIMON will be responsible for the organization of the conferences and workshops and will help with lobbing during the project. RIMON organized 1st and 2nd International Ukrainian CF Conference held in Lviv and operates in field of active lobbing trough “Program of improving the awareness of patients with cystic fibrosis – Physiotherapy as an important element in the treatment of cystic fibrosis”.

Based on previous experiences with implementation of ENPI CBC project, we decided to involve RIMON in this action to ensure more efficient and faster implementation of project. RIMON, as an organizer of CF conferences, together with experience in lobbing, proved to be the best option for the project.

The LB was designed by both Beneficiaries due the previous experiences with ENPI CBC project. LB will have financial and administrative responsibility of the project against JTS and it will be also responsible for the reporting of progress during the project implementation.

Total amount of funds: 287 575.11 EUR

Each UA Beneficiary will take financial and administrative responsibility based on project, management and communication activities defined in application form against LB.