Rare Daily Staff

The European alliance of rare disease patient organizations Eurodis is calling on the international community to prepare for a potential crisis and address the challenges of people living with a rare disease in Ukraine.

The organization in a statement asked the European Union, the United Nations, WHO Europe and other UN agencies, humanitarian organizations, and the international community at large to protect rare disease patients who are caught in the war and unable to flee and without access to humanitarian aid.

Eurodis said it will facilitate a coordinated effort with European Rare Disease federations and will support patient organizations in Ukraine as best it can to understand the challenges they are facing and to help policy makers and the international community understand the challenges people living with a rare disease face on the ground. Among the anecdotes the organization has reported are cystic fibrosis patients running out of oxygen, patients fleeing the country who are running out of medication, and lack of simple hygiene supplies.

A mother and child with a rare metabolic condition were making their way out of Ukraine, via Moldova, but with the intention of continuing on to the EU. They required access to medication, advice on countries where they would be most easily able to access medication and health services, and general support with resettlement. A patient organization was able to secure short term access to medication.

Eurodis lists nine Ukrainian rare disease organizations as members. Phone numbers and emails can be found on the Eurodis site.

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