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, including one of the known 6,000 rare diseases, the same as around 6% of the European Union population.

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 specific diagnostic procedures and treatment for rare and/or very rare diseases.

ERN eUROGEN has also signed a Memorandum of Understanding with the International Federation for Spina Bifida and Hydrocephalus (IFSBH) and OMNI-Net Ukraine and is running a series of webinars aimed at clinicians in Ukraine with a view to improving the care of patients with Spina Bifida and Other Dysraphisms (SBoD)

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.

Omni-Net Ukraine is a charitable fund focused on the care and prevention of congenital malformations and developmental disabilities, including spina bifida and other dysraphisms (SBoD).

You can find out more about them through:

• their letter of introduction;
• an information package describing their programs and circumstances in Ukraine and;
• their 2023 Annual Report.

Omni-Net Ukraine is keen to stimulate a dialogue between Ukrainian and European colleagues and would be grateful for any assistance that professionals can personally provide to help them continue their programs.

To facilitate the work of Ukrainian medical doctors in this field, the European Commission has concluded an administrative arrangement with Ukraine that will help facilitate Ukrainian healthcare providers to seek advice on Ukrainian rare or complex disease patients from members of the European Reference Networks.

This agreement builds on previous initiatives to support Ukrainian patients with rare diseases and complex conditions who have fled the war and the agreement associating Ukraine with the EU4Health programme.

Upcoming grants worth 77.4 million EUR to support the European Reference Networks will cover the period 2023-2027 and include the possibility for the Networks to collaborate with Ukrainian competent authorities and healthcare units, thus contributing to capacity building and best practice sharing with Ukraine.

The Commission continues to stand with Ukraine and has implemented this administrative arrangement with the goal of helping Ukrainian patients and families with rare diseases.

The ERNs have launched the #ERNcare4Ua website (accessible in most EU languages, in Ukrainian and Russian) with contact points for each ERN by speciality as well as their list of members in Ukraine Border countries and beyond. A central ERN contact point is also available.  

The ERNs will support all national and EU public health authorities, the European Commission (including EWRS), WHO, NGOs and any other organisation and healthcare professional, if information is needed for the triage or transfer of rare disease patients, by providing lists of healthcare providers which can provide the expert care for specific rare disease patients and providing diagnostic and therapeutic advice if no information is available or if a complex situation occurs.  All 24 ERNs can be contacted by the website, and there is a central contact point if needed.  

The ERNs will function as an EU medical HUB for rare diseases to support any Healthcare professional in need of diagnostic, treatment options or any other medical matter concerning a specific patient (by contacting the individual ERN or central ERN contact point). ERNs can organise free, virtual and secure panel discussions between our experts and healthcare professionals in Ukraine, for example if needed or any other EU Member State, to provide advice on diagnostic and treatment alternatives, including highly specialised surgery, advise on drug prescription plan and how to safely change prescriptions, particularly in cases where a given treatment is not available in the host country.

Each ERN, in collaboration with their respective medical scientific societies, can provide support to liaise with pharmaceutical companies to inform them about specific shortages of drugs, and to encourage their involvement as humanitarian partners for a faster supply of medications needed for the treatment of rare diseases and complex conditions, facilitating access to some rare and/or expensive treatments.

The 24 ERN contact points can connect with Patient Organisations and EURORDIS for information on national patient associations willing to support families and patients from Ukraine.

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.

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.

• #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