War in Ukraine

With the ongoing war, a large number of Ukrainian citizens have difficulty accessing care in Ukraine or are fleeing to EU countries. Many of these refugees have, or will have, health problems. EU governments are now clearly committed to ensuring adequate healthcare to those refugees, including patients requiring chronic treatments.

However, some of those Ukrainian citizens will suffer from one of the known 6,000 rare diseases, the same as around 6% of the European Union population. For these disorders, which are sometimes very rare, expertise is often lacking in many regions or even countries, and treatments may be very expensive and/or difficult to obtain in many centres.

The 24 European Reference Networks (ERNs) for rare diseases are specialized in the diagnosis and treatment of rare/very rare illnesses in each of their medical specialities. They have member hospitals (healthcare providers, HCPs), often university centres, distributed in most or all EU countries (depending on the ERN), including the EU countries neighbouring Ukraine.

ERN eUROGEN’s HCP centres (hospitals), particularly those located in the countries currently receiving large numbers of refugees (Poland, Slovakia, Hungary, Romania), are ready to help Ukrainian patients with rare and/or very rare diseases, for specific diagnostic procedures and treatment.

The ERNs also have strong relationships with industrial partners manufacturing drugs for rare illnesses, potentially allowing easier access to some rare and/or expensive drugs. They also cooperate daily with patient support groups at the national level, who have a good knowledge of local situations for managing rare diseases. These patient groups work under the umbrella of European patient advocacy groups, especially EURORDIS.

The Rare Diseases Hub Ukraine connects patients from Ukraine with rare disease organisations and hospital members of the ERNs with the aim of providing the specialised medical support they may need.  You can download a presentation about the Hub here. In addition, the #ERNcare4Ua website provides information on all 24 ERNs.

Please don’t hesitate to contact us about patients in need of highly specialized diagnosis or treatment for their urogenital rare disease or complex condition.

• #ERNcare4Ua website for people with Rare Diseases and Complex Conditions affected by the war in Ukraine
• Statement from the Coordinators of the 24 European Reference Networks (ERNs), 14 March 2022
• European Commission Information relating to the War in Ukraine
• European Commission Publication on access to health care in EU countries for persons displaced from Ukraine
• EURORDIS Ukraine Rare Disease Resource Centre
• EURORDIS Statement, 24 February 2022
• EURORDIS Statement, 16 March 2022 
• Orphanet Resources for Refugees and Displaced Persons with Rare Diseases
• European Cancer Organisation Resource Centre
• EAU Statement on the War in Ukraine, 7 March 2022
• EAU Updated Statement on the War in Ukraine, 11 March 2022
• ESPU Statement on the Violence Against Ukraine
• EUPSA Statement and Resources on the War in Ukraine, 25 February 2022

If you are from an ERN eUROGEN HCP and have treated any rare disease patient refugees from Ukraine, please complete this survey by the initiative as the EC is very much observing this.