New OIFE member – Ukraine
Who are you and what is your relationship to OI?
My name is Karina and I am mother to 8 year old girl with OI type 3. We live in Rovno, which is located in Western Ukraine.
Can you tell us a few words about Ukraine?
Ukraine is a country in Eastern Europe. It has a population of about 42.5 million, making it the 32nd most populated country in the world. It is the second-largest country in Europe. Capital and biggest city is Kiev. Ukrainian is the official language and its alphabet is Cyrillic. Country borders with Russia, Belarus, Poland, Hungary, Moldova, Slovakia and Romania.
Can you tell us about your organization?
The organization “Ukrainian Organization Crystal People” (UOCP) was created on June 2014. So far we have been in touch with 200 persons with OI. These are our goals and activities:
• Gathering people with OI and their families into Association and database compilation;
• Our organization is funded by private donors, which helps to cover at least some expenses, that patients with OI have (medical support, surgeries, rehabilitation and genetic tests)
• Informative support for members of the Association, exchange of experience with OI related matters, and in situations where people with OI and their families feel lonely;
• Informing public and health care responsible government institutions about needs and problems of people with OI and their families;
• Collecting information and publication in mass media about OI;
• Medical database compilation of doctors and medical professionals who have experience in treatment of patients with OI
How do you recruit members/promote the organization?
We have a website & a Facebook group and information about the organization has been sent out to main hospitals, genetic doctors, rehabilitation doctors and other health care professionals in Ukraine.
What are your biggest challenges?
Unfortunately there are a lot of challenges for patients with OI. Currently the biggest challenges for Ukrainian patients with OI are:
– the absence of diagnostics (genetic analysis)
– the absence of protocol for OI surgery and treatment, approved by the government and Ministry of health.
– too little professionals for kids/adult health care, who know about European protocol for OI surgery and treatment.
– expenses, that patients with OI have (medical support, surgeries, rehabilitation and genetic tests).
What are your plans for the future?
Our goal is to have protocols for OI surgery and treatment, approved by the government and Ministry of health and free medical treatment for patients with OI. To collaborate more with doctor associations in Ukraine and other countries to get OI more visible among doctors in order to get the best health care as possible. To share information about OI and help those who are having OI and their families