Transfer of know-how and creation of Cystic Fibrosis Centre to ensure better care for Cystic Fibrosis patients in Ivano-Frankivsk Region

Programme 2014 - 2020 Hungary - Slovakia - Romania - Ukraine ENI CBC

Date of latest update: 2024-06-29

Description

Description (EN):

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 fundings for medicines, equipments and tools. The situation in Slovakia is better, but still need more education, equipment and access to new therapies. 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 patients 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-Frankivsk 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.

Website: https://huskroua-cbc.eu/

Expected Results (EN):

1. Improvement of diagnosis, treatment and physiotherapy for CF patients by creating Cystic Fibrosis Center (CF Center) in Ivano-Frankivsk and providing the necessary medical equipment in SK and UA Thanks to this we should: - create a better conditions for diagnostics, treatment and physiotherapy for CF - provide better access to appropriate diagnosis, treatment, physiotherapy and other services for CF patients 2. Expand and improve education about CF diagnostics, medication, physiotherapy, nutrition, daily care and new therapies between healthcare professionals, patients and their family members. Thanks to this we should: - improve the quality of life of CF individuals by greater understanding of CF and CF daily care and treatment among CF patients and their family members - spread the knowledge about CF by organising common workshops, trainings and conferences we would like to transfer the know-how and educate healthcare professionals and provide qualified, well educated staff for new CF Center 3. Establishing a basis for effective lobbying at regional and national level to improve the access to appropriate financing of CF care and new therapies in SK and UA. Thanks to this we should: - create UA CF Patients Registry - activate the local, regional and national subjects to the common cooperation in the field of CF as a chronic rare (orphan) disadvantaged disabled genetic disease - create Guidelines and recommendations for CF care in new CF Centre - improve quality of life and life expectancy for people with CF.

Thematic information

Health and social services

Thematic Objective: Common challenges in the field of safety and security

Partners (3)

Lead Partner: Slovak Cystic Fibrosis Association

Address: Park Angelinum 2, 4001 Košice, Slovakia

Legal status: private

Website: https://www.cfasociacia.sk/

Total budget: EUR 145 395.08

ENI budget: EUR 130 855.57

Charitable Foundation for Innovation Development in Medicine “Rimon”

Name: Charitable Foundation for Innovation Development in Medicine “Rimon”

Address: Velyka Zhytomirska 20, 1001 Kyiv, Ukraine

Legal status: private

Website: http://rimon.in.ua/

Total budget: EUR 79 816.63

ENI budget: EUR 71 834.96

Ivano-Frankivsk Regional Clinical Children's Hospital

Name: Ivano-Frankivsk Regional Clinical Children's Hospital

Address: Konovaltsya str 132, 76014 Ivano-Frankivsk, Ukraine

Legal status: public

Website: http://www.odkl.if.ua/

Total budget: EUR 62 363.40

ENI budget: EUR 56 127.06

Partners map

Partners and Projects info

Charitable Foundation for Innovation Development in Medicine “Rimon”

Transfer of know-how and creation of Cystic Fibrosis Centre to ensure better care for Cystic Fibrosis patients in Ivano-Frankivsk Region

Partners and Projects info

Ivano-Frankivsk Regional Clinical Children's Hospital

Transfer of know-how and creation of Cystic Fibrosis Centre to ensure better care for Cystic Fibrosis patients in Ivano-Frankivsk Region

Partners and Projects info

Slovenská Asociácia Cystickej Fibrózy

Transfer of know-how and creation of Cystic Fibrosis Centre to ensure better care for Cystic Fibrosis patients in Ivano-Frankivsk Region

Lead partner

Project partner

Summary

Project name (EN): Transfer of know-how and creation of Cystic Fibrosis Centre to ensure better care for Cystic Fibrosis patients in Ivano-Frankivsk Region

Project acronym: SK UA CF CARE

Project start date: 2019-09-01

Project end date: 2022-08-31

Project status: closed

Total budget/expenditure: EUR 287 575.11

Total EU funding (amount): EUR 258 817.59

Co-financing sources:

ENPI/ENI/NDICI: Amount, EUR 258 817.59.

Information regarding the data in keep.eu on the programme financing this project

Financing programme

2014 - 2020 Hungary - Slovakia - Romania - Ukraine ENI CBC

Last month that data in keep.eu was retrieved from the Programme's website or received from the Programme

2023-03-08

No. of projects in keep.eu / Total no. of projects (% of projects in keep.eu)

78 / 78 (100%)

No. of project partnerships in keep.eu / Total no. of project partnerships (% of project partnerships in keep.eu)

268 / 268 (100%)

Notes on the data

Information provided by the Programme. One project (Zero Waste) was retrieved by Interact from the programme´s website on the 2023-03-07. Achievements were retrieved by Interact from the Programme website ( https://huskroua-cbc.eu/), or a website directly linked from it, on 2024-02-01.

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Transfer of know-how and creation of Cystic Fibrosis Centre to ensure better care for Cystic Fibrosis patients in Ivano-Frankivsk Region

Description

Thematic information

Partners (3)

Partners map

Summary

Information regarding the data in keep.eu on the programme financing this project

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