About the charity project "Medical tests for butterfly children"
This Foundation`s Project has been approved by the Community Initiative of the European Bank for Reconstruction and Development (EBRD)
. In case of successful fundraising, the EBRD will double the collected amount. Therefore, the Foundation's project could cover a double quantity of patients. Project Partner
- DEBRA Ukraine
to cover costs of medical and laboratory tests of the most vulnerable and severe patients living with a rare genetic skin and mucous tissues disorder called Epidermolysis Bullosa (EB). Number of patients
to be covered by the Project - 20 patients
with the most severe form of EB (dystrophic). If the EBRD double the collected amount, the Project could cover 40 patients
– the minimum target $6,000 * (up to $ 300 per patient per year) Fundraising period
– November 2021 - April 2022 Reports
– on www.supportrare.com
, on facebook www.fb.com/orphannisynytsi
Epidermolysis Bullosa is a rare (orphan) disease. Due to a genetic disorder the patients have a thin and fragile skin like a butterfly wing that tears even from a touch with formation of painful blisters and wounds. All over the world such people are called "butterflies".
The lives of butterfly children are very difficult. Wounds on the skin become chronic with age and hardly heal. The disease affects not only the skin but also the tissues inside the body. To prevent complications, critically ill patients should undergo regular medical check ups at least 4 times a year.
They have to perform testing for anemia, osteoporosis, vitamin deficiency, checking wounds for infection. Certain tests are free of charge only in specialized state medical institutions in Kyiv. But not every severe patient with EB has the opportunity to go from different parts of Ukraine to Kyiv every 3 months, especially in the context of the coronavirus pandemic. Moreover, some tests can be performed only in private laboratories (or their partners abroad), as public ones are not provided with relevant reagents. Families have to pay for these tests. It takes a lot of money that most families do not have. Tests to be covered by this charity project:
1. Bacteriological tests (up to 5 wounds).
2. Blood tests (for hemoglobin, general, biochemistry).
3. Vitamins 25 (OH) D, A, C, B1, B6, B12, E, folic acid, zinc. Selenium, carnitine and other important values.
4. Bone mineralization and osteoporosis checks.
We kindly ask you to support this project – even minimum donations ($ 5 -10 ) put together count for a great deal! Ony together we can make easier the life of "butterfly" children and guard their health.
* the amount of fundraising will be doubled by the EBRDAccording to the EBRD requirements donations to be raised on the special Foundation's Project accounts:
Charitable Organisation Charitable Foundation "Orphanni Synytsi"
7, Rusanivsky boulevard, office 3, Kyiv, Ukraine 02154
USREOU identification code 42499332
JSC CB PRIVATBANK MFO 305299 In case of insufficient amount of donations for implementation of this project or surplus donations, they will be used for other charity projects of the Charitable Foundation "Orphanni Synytsi" to provide rare disease patients with medical equipment/devices/medicines/rehabilitation and/or for the Help Line project. Amounts of donations are non-refundable. By making a donation, the donor agrees to the specified terms of funds use.