3 oxygen concentrators, 2 inhalers and 2 aspirators delivered to people with rare diseases
December 2021
Dear friends!
We are happy to share good news on what's been already done by us – thanks to your donations - for supporting people living with rare (orphan) diseases!
4 children with various rare diseases have already recently received special medical respiratory equipment for everyday in-home use.

2 girls living with a rare diagnosis Cystic Fibrosis - Nastya (9 y.o.) from Kyiv and Katya (11 y.o.) from the Kyiv region received powerful inhalers which would allow them to breathe freely, and their families - not to worry because there will be no unexpected missed inhalations.
Nastya and Katya require drugs' inhalations several times a day. Otherwise, their airways cannot remove the mucus that accumulates because of this rare disease. This is why patients with CF often suffer from chronic infections of the lungs and bronchi. Ordinary inhalers do not withstand daily multiple use. Thus, special powerful inhaling devices are of crucial need for such patients.

Special medical respiratory devices are critically necessary for patients with Spinal Muscular Atrophy (SMA) as well.
Ruslan (11 y.o.) from Zaporizhzhia region and Denis (12 y.o.) from Zakarpattia region are both living with SMA. This progressive disease, due to muscle weakness, causes severe issues with breathing and swallowing. When a child is unable to swallow saliva on its own, it should be removed (aspirated) regularly with an aspirator. Otherwise there is a risk of bronchitis and pneumonia. It becomes quite dangerous when a child with SMA gets cough and cold and needs aspirations every 15 minutes. So, with the aspirators that we provided to the boys their families can help them to breathe freely.

On behalf of the families with these girls and boys whom we supported, we would like to thank all the donors for their help in providing these children with life-saving respiratory equipment!

Your further participation in our project: https://goto.gg/54000 and sharing the story of our work with your network would give a chance to enhance the lives of Ukrainian children and adults with rare diseases!

May the New year 2022 bring health and happiness to you and your families!

NEWS November 2021
Our dear Donors! We are happy to share our great news with you on the the project progress in supporting people living with rare diseases !
Thanks to your donations on our project on GlobalGiving https://www.globalgiving.org/projects/supporting-r... the first part of life-saving medical equipment - 1 portable and 2 stationary oxygen concentrators - was delivered to patients living with a rare disease in Ukraine.
They all have a rare diagnosis – pulmonary hypertension (PH). This disease can affect people of all ages and, unfortunately, it gets worse over time causing the heart and lungs disorder. It cannot be cured but we can help to improve the quality of life of such people. Apart from various complications, they need oxygen concentrators for everyday oxygen therapy.

Karina is 27. She is from Kyiv, the capital of Ukraine. Despite sufferring from pulmonary hypertension since her childhood, Karina graduated successfully from the university. This young lady, unfortunately, had to stop her professional career of a lawyer because of her illness progression. The doctors recommended a heart-lung transplantation. Still being on the transplant waitlist Karina has to live her life carefully with everyday medications and oxygen support. But Karina is very enthusiastic. She tries to stay active and brighten her life like any other young people. Her great passion is painting. You can enjoy her paintings attached on the photo.

Lyubov is from Chernihiv, the city to the North of Ukraine. She was diagnosed with PH 6 years ago and now needs a lung transpalntation. Over last few years she took a very active part in the activities of the Ukrainian NGO - The Association of Patients with Pulmonary Hypertension. Lyubov has a job and wants to stay active as long as possible. So, with the portable oxygen concentrator that we've donated to Lyubov, she will have some mobility and ability to work out of home.

Alla is from Zhytomyr region of Ukraine. She was born with congenital heart disorder that caused pulmonary hypertension. Every time when her breathlessness worsened, Alla had to go to hospital. Now, with the oxygen concentrator, she has the 24-hour access to the respiratory in-home care she needs.

Thanks to your participation in our project https://goto.gg/54000 we have the opportunity to enhance the lives of 3 women with rare diseases! Your kindness makes a great encouragement for patients and their families!

We'll publish an update on GlobalGiving to share stories of what we've been able to accomplish with your great support. If you're willing to share the story of our work with your network, we'd be incredibly grateful.

About the Foundation`s project on GlobalGiving
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.

Our project on GlobalGiving https://www.globalgiving.org/projects/supporting-r... 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
Project goal - 10,000 $
Quantity - 20 units of respiratory equipment
Project implementation period - September 2021 - March 2022
Reports- regular progress reports on GlobalGivivng https://goto.gg/54000, on CF Orpahanni Synytsi website www.supportrare.com and FB page www.fb.com/orphannisynytsi

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.

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.

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.

*charitable funds raised by the CF Orphanni Synytsi on GlobalGiving are to be allocated on implementation of current Foundation`s projects geared to provide rare disease patients with medical respiratory equipment:
- oxygen concentrators http://supportrare.com/dihatizhiti
- aspirators http://supportrare.com/aspirators
- іnhalers http://supportrare.com/takeabreath