Since Russia’s full-scale invasion of Ukraine in February 2022, the country’s healthcare system has come under enormous strain, including for the small number of specialist centres that patients with rare uro-recto-genital diseases and complex conditions already relied on before the war. Many Ukrainian clinicians have continued to treat these patients throughout the conflict, often with limited access to the specialist advice, training, and equipment they would otherwise draw on. At the same time, many Ukrainian patients and families have been displaced, either within Ukraine or across its borders, disrupting ongoing care and follow-up for conditions that often need lifelong, specialised management. ERN eUROGEN has worked to support both groups: helping clinicians who remain in Ukraine access specialist advice and training for the rare and complex conditions the network covers, and helping patients who have left the country find specialist care in the countries where they now live. Please don’t hesitate to contact us about patients in need of highly specialised diagnosis or treatment for their uro-recto-genital rare diseases or complex conditions. Since November 2023, ERN eUROGEN has run a joint webinar series for Ukrainian clinicians and patients, delivered in collaboration with OMNI-Net Ukraine. IFSBH, ERN ITHACA, and ERN ERKNet. Recordings remain freely available and have attracted substantial further views on the ERN eUROGEN YouTube channel. An administrative agreement between the EU and Ukraine allows the use of CPMS in Ukrainian territory, giving Ukrainian clinicians a direct route to bring complex cases to ERN eUROGEN’s experts. Cases are triaged nationally by the Rare Diseases Hub in Kyiv, which checks that referrals fall within ERN eUROGEN’s scope before they reach the network. The first Ukrainian clinician, based at the Khmelnytskyi Children’s Hospital, was given guest access to CPMS, and on 2 June 2025 the network held its first successful case discussion for a Ukrainian patient, a nine-year-old girl with spina bifida. The clinician indicated they intended to bring at least three further cases for discussion. ERN eUROGEN’s CPMS Helpdesk supports all clinicians using the system, and a dedicated webinar session, “Improving Rare Disease Care in Ukraine – Access to ERNs & Expert Resources“, has been delivered to explain how Ukrainian clinicians can access CPMS via the Rare Diseases Hub in Kyiv. 👉 Refer a clinical case to us In November 2025, ERN eUROGEN shared a selection of its patient information materials and clinical guidelines with the Rare Diseases Hub Ukraine, OMNI-Net Ukraine, and the Khmelnytskyi Children’s Hospital, for use by clinical teams, partner centres, and families across Ukraine. These resources are currently available in English only. There is no dedicated budget for translation at present, but the Coordination Team is open to exploring Ukrainian-language versions if this would be valuable; contact us if this is something your organisation needs. 👉 Guidelines ERN eUROGEN has built direct working relationships with clinicians and organisations inside Ukraine itself. The network has signed a Memorandum of Understanding with the International Federation for Spina Bifida and Hydrocephalus (IFSBH) and OMNI-Net Ukraine, including a joint webinar programme for Ukrainian clinicians and patients. ERN eUROGEN has also taken part in several awareness-raising initiatives with Ukrainian authorities and clinicians: In February 2024, the network’s Programme Manager joined a panel discussion at Kyiv’s International Rare Disease Day event, alongside representatives of the Ukrainian Ministry of Health, the National Health Service of Ukraine, the Ukrainian Parliament, EU institutions, and patient organisations including EURORDIS. Around Rare Disease Day 2025, ERN eUROGEN also took part in a Ukrainian-organised webinar for the country’s Reference Centres, explaining how the ERN system works and how Ukrainian centres could get involved. In June 2025, the network’s Programme Manager joined a further webinar with Dr Natalia Zymak of the Khmelnytskyi Children’s Hospital, one of the first Ukrainian healthcare providers designated for rare disease care in spina bifida; the session was attended live by 47 participants from Ukrainian hospitals. In January 2025, ERN eUROGEN wrote directly to Ukraine’s two main urological societies, as part of a wider outreach campaign to national urological societies across the EU/EEA, setting out how their members could refer patients via CPMS, join the ERN eUROGEN registry, access guidelines and patient materials, attend webinars, and subscribe to the network’s newsletter. OMNI-Net Ukraine is a Ukrainian non-profit organisation founded in 2004. It works through a network of resource centres, principally in Rivne, Lutsk, and Khmelnytskyi, providing care for children with birth defects and developmental disabilities, including spina bifida and other dysraphisms (SBoD). Its work includes population-based birth defects monitoring to international standards, as a member of the European Surveillance of Congenital Anomalies (EUROCAT) and the International Clearinghouse for Birth Defects Surveillance and Research; early detection and clinical care for Fetal Alcohol Spectrum Disorders; campaigning for mandatory folic acid fortification of flour to help prevent neural tube defects; and monitoring the ongoing effects of Chornobyl-related radiation exposure in pregnant women in the Rivne region. Since Russia’s full-scale invasion, OMNI-Net has also run a dedicated programme supporting Ukrainian children with disabilities and their families. 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. 👉 Rare Diseases Hub Ukraine website Established in 2014, Public Union Rare Diseases of Ukraine is the first and only organisation in Ukraine that unites rare disease patient organisations and consistently defends their rights and legitimate interests. They actively collaborate with medical institutions, government agencies, and other organisations and initiatives, both nationally and internationally, working to create a supportive environment for patients living with rare diseases and their families. They have also developed a network of reference centres, identifying specific hospitals by speciality. The ERNs launched the #ERNcare4Ua website, accessible in most EU languages as well as Ukrainian and Russian, with contact points for each ERN by speciality, a list of members in Ukraine’s border countries and beyond, and a central ERN contact point. Through this website, the ERNs support national and EU public health authorities, the European Commission (including the Early Warning and Response System), WHO, NGOs, and healthcare professionals more broadly, by providing lists of healthcare providers able to give expert care for specific rare disease patients, and by offering diagnostic and therapeutic advice where none is otherwise available. This can include free, virtual, and secure panel discussions between ERN experts and healthcare professionals in Ukraine or elsewhere, covering diagnostic and treatment options, highly specialised surgery, and advice on safely changing medication where a treatment isn’t available in the host country. Each ERN, working with its medical and scientific societies, can also help liaise with pharmaceutical companies on specific drug shortages, encouraging their involvement as humanitarian partners to expedite the supply of medicines for rare diseases and complex conditions. The 24 ERN contact points can additionally connect with patient organisations and EURORDIS for information on national patient associations willing to support families and patients from Ukraine. If you are an ERN eUROGEN HCP and have treated a patient with a rare disease who is a refugee from Ukraine, please complete this survey; the European Commission is closely monitoring this initiative.Support for Ukraine
Webinar Programme for Ukrainian Clinicians & Patients
Clinical Case Support through CPMS
Guidelines and Patient Information
👉 Patient informationWorking with Ukrainian Partners and Authorities
Omni-Net Ukraine
Rare Diseases Hub Ukraine
👉 Download a presentation about the hubPublic Union Rare Diseases of Ukraine
Cross-ERN Support: #ERNcare4Ua
Survey for HCPs
Other Links & Resources
Support for Ukraine
