Short news

We will regularly publish short stories or general comments showing how collaboration between ERNs is helping to ensure care for rare disease Ukrainian patients

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ERNs and children’s hospitals work together to support Ukrainian children with rare diseases

The Children's Memorial Health Institute in Warsaw, a member of the European Children’s Hospital Organisation (ECHO) and the TRANSCHILD ERN, received last week three patients evacuated from Kyiv via Lviv in acute liver failure from complications of Wilson’s disease. A request was sent to ECHO hospitals and the ERN coordinators to inquire about the possibility to accept two of the incoming patients to aid in their care. Schneider children’s hospital in Israel, an ECHO member, and University Medical Centre Hamburg-Eppendorf, a member of the ERN RARE-LIVER in Germany, stepped forward to accept one patient each even before the patients arrived at Warsaw.  Within 24 hours of arrival, the patients were stabilized and transferred to the final destination for acute care.  An example of the value of having established international networks of hospitals and specialized centers for the care of complex rare diseases in moments of a health crisis.