Sant Joan de Déu Hospital, Barcelona, Spain and Okhmatdyt National Children’s Specialized Hospital

A Memorandum of Understanding between the institutions was signed during the Third Summit of First Ladies and Gentlemen, held in September 2023.

As part of the cooperation, the following activities have already been implemented:

• Internship programs for doctors from the Orphan Disease Center;
• Establishment of a HUB for orphan patients at Okhmatdyt (funded by the European Union), which provides consultative support to patients with rare diseases living in temporarily occupied territories and abroad;
• Creation of a virtual coordination center — Rare Disease Hub Ukraine — to offer guidance and support to patients diagnosed with rare (orphan) diseases;
• Development of a multidisciplinary approach to the diagnosis and clinical management of critically ill patients, ensuring the highest possible level of specialized medical care. The quality of clinical support is enhanced through expert consultations involving highly qualified specialists with the necessary knowledge, skills, and experience;
• Participation in joint conferences;
• Online consultations for patients, among other activities.

Since its launch in Ukraine in January 2023, the Center’s team has received 184 requests related to orphan patients.