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
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
Supporting Rare Disease Patients
Supporting Rare Disease Patients

Summary

If diagnosed with a rare genetic disease, most people can expect an expensive life-long treatment and a disability. 70% of rare diseases start in childhood. Some of them cause severe breathing disorders. Patients begin to live with fear of suffocating. We raise funds for medical equipment for everyday in-home care - oxygen concentrators, inhalers, aspirators, non-invasive lung ventilators, etc. Most Ukrainian families can not buy this expensive equipment because of the humanitarian crisis.

$50,000
total goal
$38,969
remaining
205
donors
2
monthly donors
2
years

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, especially now in the wartime and blackouts. This makes them vulnerable, worsens their health and 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 (including equipment with rechargeable batteries), which is 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 critically needed for the uninterrupted treatment during emergency blackouts due to the war in Ukraine.

Long-Term Impact

By supporting people with rare diseases in Ukraine and providing them with life-saving medical equipment for in-home use which can function with rechargeable batteries, we will save their health and life. This project will help them to survive in the conditions of the war and blackouts in Ukraine caused by the enemy missile attacks on the critical infrastructure.

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 Mykhailova
Kyiv , Kyiv Ukraine
$11,031 raised of $50,000 goal
 
280 donations
$38,969 to go
Donate Now
lock
Donating through GlobalGiving is safe, secure, and easy with many payment options to choose from. View other ways to donate

CF Orphanni Synytsi has earned this recognition on GlobalGiving:

Help raise money!

Support this important cause by creating a personalized fundraising page.

Start a Fundraiser

Learn more about GlobalGiving

Teenage Science Students
Vetting +
Due Diligence

Snorkeler
Our
Impact

Woman Holding a Gift Card
Give
Gift Cards

Young Girl with a Bicycle
GlobalGiving
Guarantee

Get incredible stories, promotions, and matching offers in your inbox

WARNING: Javascript is currently disabled or is not available in your browser. GlobalGiving makes extensive use of Javascript and will not function properly with Javascript disabled. Please enable Javascript and refresh this page.