How European reference networks help Ukrainian patients

Patients, civilian victims of the Russian bombings are treated in a hospital in Kharkiv, Ukraine, 24 March 2022. [EPA-EFE/ANDRZEJ LANGE POLAND OUT]

European reference networks (ERNs) have started sharing their knowledge to help more than two million Ukrainian patients suffering from rare diseases, with one expert describing the condition of those still in the country as “catastrophic”. 

24 European Reference Networks (ERNs) is an EU-wide cooperation project which helps to share knowledge and expertise in the bloc in the field of rare or complex diseases. 

“These networks virtually connect specialised health care centres, dealing with rare and low prevalence complex diseases across the whole EU,” Martin Dorazil, deputy head of unit covering European Reference Networks at the Commission’s DG Santé, explained during a webinar on “Supporting Ukraine, neighbouring EU member states and Moldova”.

“At the moment, these networks bring together around 1,500 specialised healthcare units in all the member states and in Norway,” he told the webinar, held on 23 March. 

Since Russia’s invasion of Ukraine, ERNs were, in Dorazil’s words,  “very quickly activated”. 

“They immediately offered their help, assistance and support to the Ukrainian hospitals and patients, and especially to ERN members that are located in the frontline member states,” Dorazil said.

A mechanism for regular updates was set up, ensuring weekly meetings, as well as a website “intended to be a single point of contact for patients and healthcare professionals or NGOs that are looking forward to the information about the available options for rare disease patients in the EU”.

Helene Dollfus, the chair of the ERNs coordinators’ group, said that “there are more than 7,000 rare diseases and this represents 6% of the population”. She continued: “So in Ukraine, probably more than two million patients”. 

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Two groups of patients

There are two main groups of patients out of those two million – the ones who stayed in Ukraine and those who left. For those remaining in Ukraine, the situation is “catastrophic,” Dollfus said. As the war has been raging for over a month now, it is unknown how to reach internally displaced patients. 

Not only do the patient associations not know where the patients are but also extreme logistic needs make it impossible to deliver medicine.

The majority of patients who made their way out of Ukraine remain in Poland. For the Ukrainian patients in Poland, as well as those in other countries, the identified needs included urgent therapy, or even surgery, as well as advice on therapies such as changing drugs or even specific diets that had to be stopped due to lack of supplies. 

“The needs we have identified are major therapy needs […] for instance, for dialysis. Also the need for urgent surgery like transplants. We have actually heard about patients in Ukraine who need pulmonary transplants,” Dollfus said.

“We have also been informed that there are diagnostic needs because patients arrive without any files and they do not know exactly what the conditions are,” she added.

When it comes to drugs, shortages, they are felt not only for orphan drugs but also for common drugs. 

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Two-level of action

Dollfus said that two levels of action were set at the level of the ERNs to help those in need. 

First, a “medical hub for rare diseases” was set up that is “a case per case level of action”. Once the hub is contacted, the network tries to solve the issue. 

“For instance, we were contacted by the European Children’s Hospital organisation with the contribution of the Children Hospital in Warsaw about a child who needed a transplant and we were able to find the place thanks to ERNs in Germany for this child,” Dollfus said.

For the second level of action, for patients who need hospitalisation or daily care or extra specialised care, Dollfus stressed the need for “an integrated action with the European Commission and all the national public health authorities”.

In this case, ERNs could be used for “medical guidance for triage or transfer, providing a list of experts centres across the EU and recommendation on which type of transfer may be the best medical advice also on diagnosis, especially for patients who do not have any files”. 

ERNs are offering this help to Ukrainian hospitals “where maybe they do not have experts to help them [rare disease patients]”. 

[Edited by Zoran Radosavljevic]

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