ABOUT THE COORDINATION CENTER FOR RARE DISEASES
The Virtual Coordination Center "Rare Disease Hub Ukraine" for the provision of coordination assistance to patients with orphan diseases (abbreviated name - HUB) was created for the purpose of coordination assistance to patients diagnosed with rare (orphan) diseases.
You can also send a request to the e-mail address, or contact HUB employees by phone:
+38 068 124 0804
HISTORY OF CREATION
Since July 2022, a virtual Center (HUB) for rare diseases for Ukrainian patients has been operating in Barcelona, Spain, which dealt with requests for finding a medical facility, treatment or specialist for those patients who traveled abroad or tried to find it locally in Ukraine.
In December 2022, the HUB at the children's hospital in Barcelona was closed and there was a need to open a similar Center (HUB) in Ukraine, with the involvement of specialists from the National Children's Specialized Hospital Ohmatdyt, in order to provide more coordinated assistance to Ukrainians with rare diseases who need it.
The Center for Rare Diseases (HUB) was created by the charitable foundation "Ohmatdyt - is Healthy Childhood" on the initiative of EURORDIS, European Reference Networks (ERN), the Children's Hospital in Barcelona, the European Organization of Children's Hospitals (ECHO) and with the approval of the Ministry of Health of Ukraine and the European Commission.
THANKS TO THE COORDINATION CENTER FOR RARE DISEASES, A RESULT WAS ACHIEVED
138+
Total number of appeals
52
Identified orphan diseases
24%
Receiving treatment abroad
21%
Receiving treatment and diagnosis in Ukraine
55%
Other requests
HIGHLY QUALIFIED HELP OF DOCTORS "OHMATDYT"
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EFFICIENCY
A multidisciplinary approach in the diagnosis and clinical support of seriously ill patients ensures the most optimal level of providing qualified highly specialized medical care. The high quality of clinical support is provided by a wide range of expert advice from highly qualified specialists with the necessary knowledge, skills, and experience.
The Virtual Coordination Center for Rare Diseases for Ukraine with the involvement of specialists from the NCSH "Ohmatdyt", the first 2 months of its work starting from December 16, 2022, had a pilot activity as a tool for centralizing requests from Ukrainian patients with rare diseases and connecting them to available support systems.
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THE BEST DOCTORS
Two specialist doctors from the "Ohmatdyt" Children's Hospital, who have considerable experience in working with patients with orphan diseases, started working in the center.
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ACHIEVEMENTS
In the two months of activity, starting in December 2022, the Hub received a total of 45 applications, of which only 16 related to orphan diseases.
As of February 2023 (the reporting period), 12 (80%) appeals were processed and relevant information was provided or patients received the requested assistance. 4 (20%) appeals were still being processed.
