Supporting Rare Disease Patients

by CF Orphanni Synytsi
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients
Supporting Rare Disease Patients

Summary

If diagnosed with a rare disease, most people can expect a genetic origin, an expensive life-long treatment, and a disability. 70% of rare diseases start in childhood. Some of them cause severe breathing difficulties and these patients begin to live each day with fear of suffocating. This project aims to raise funds for purchasing the specific medical equipment - oxygen concentrators, inhalers, aspirators- for 20 patients so they can have access to the everyday respiratory in-home care they need

$10,000
total goal
$2,073
remaining
154
donors
3
monthly donors
8
months

Challenge

Rare diseases are often genetic and incurable. Since they occur rarely, they are not the public health priority; this is a reason they are also called "orphan" diseases. In Ukraine there`s a constant lack of effective healthcare for these patients. This not only makes them particularly vulnerable but also worsens their health and shortens their life expectancy. Unfortunately, the crucial life-long medical respiratory equipment for in-home use is not covered by the State Health Care system.

Solution

This project is geared to help the rare disease patients meet their health care needs by providing the specific medical equipment, which is often far too expensive for most of them. One of the benefits of this is that adults and children could avoid hospitalizations when they have the necessary medical equipment for in-home use. This equipment is important and effective for the treatment of these life-long rare diseases.

Long-Term Impact

By supporting people with rare diseases in Ukraine and providing them with life-saving medical equipment, we will improve their health and quality of life in many areas such as education, working-life, traveling, home-life, and more. The access to the comprehensive healthcare and treatment means that rare disease patients can live longer, work and benefit the State, and be a part of society in ways that they couldn't in the past.

Additional Documentation

This project has provided additional documentation in a PDF file (projdoc.pdf).

Resources

Organization Information

CF Orphanni Synytsi

Location: Kyiv - Ukraine
Website:
Facebook: Facebook Page
Project Leader:
Tetiana Zamorska
Kyiv, Kyiv Ukraine
$7,927 raised of $10,000 goal
 
177 donations
$2,073 to go
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