Physical Health Ukraine Project #54000

Supporting Rare Disease Patients

by CF Orphanni Synytsi

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 difficulties. Patients begin to live everyday with fear of suffocating. We raise funds for medical equipment - oxygen concentrators, inhalers, aspirators etc. including those with rechargeable batteries so the patients can have access to the everyday in-home care in the wartime and blackouts in Ukraine.

$50,000
total goal

$39,782
remaining

201
donors

2
monthly donors

1
year

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.