Useful links

Rare Diseases European Actors

Rare Diseases Hub Ukraine

This application connects patients from Ukraine with a rare disease with organizations and hospitals, members of the European Reference Network (ERN), with the aim to provide the specialized medical support they may need during this emergency.



On Orphanet you can enter a disease and find the corresponding ERN or any other professional. Orphanet is a unique resource, gathering and improving knowledge on rare diseases so as to improve the diagnosis, care and treatment of patients with rare diseases. 


European Commission

Find here all information about ERNs that are funded by the European Commission. On 4 March 2022, the Council adopted unanimously the implementing decision introducing temporary protection due to mass influx of persons fleeing Ukraine as a consequence of the war.



EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 988 rare disease patient organisations in 74 countries.

EUROPEAN CANCER ORGANISATION includes links to resources in different relevant languages.  


In the face of this crisis, SIOPE is currently working with its partners from St Jude GlobalSIOP International and Childhood Cancer International (CCI Europe) to provide help and advice for Ukrainian community. SIOPE ensure the best possible care and outcome for all children and young people with cancer.

Medical University in Lublin

The Medical University in Lublin created a website to help Ukrainian people. You find useful information about material, financial and psychological help.

ILAE Actions to Support People with Epilepsy Affected by the Situation in Ukraine

On 7 March 2022, ILAE held a meeting with leaders from chapters in all countries affected by the situation in Ukraine. The group agreed on a set of seven key actions. ILAE is also forming a task force to oversee implementation of these actions, as well as to advise on the unfolding situation. Further information on all these activities including details on our fundraising campaign will follow shortly.