What is EURORDIS?

EURORDIS early response includes

1. Supporting Ukrainians living with a rare disease to relocate or leave the country, through information resources, and working with local patient groups and partners

2. Supporting Ukrainians living with a rare disease when arriving as refugees in neighbouring countries and to relocate across EU, through patient networks and partners catalysing new solidarities

3. Informing European, EU-national and Ukrainian authorities of the specific challenges facing Ukrainians living with a rare disease and advocate for them to address these issues

4. Liaising with Humanitarian organisations to both help solve specific requests for help and to advocate more broadly that they integrate PLWRDs in their response to the crisis

EURORDIS Reports

EURORDIS has published a report highlighting key issues and recommendations to support families affected by a rare disease displaced from Ukraine to Poland. This report was completed in collaboration with a number of organisations working in Poland and Ukraine.

EURORDIS statements

16 March, Paris – Uniting for the two million Ukrainians living with a rare disease

Three weeks into Russia’s invasion of Ukraine, on 15 March, the EURORDIS’ Board of Directors held a meeting to review the situation of the rare disease patient community in the country and set the course of action. The response to this new crisis is at the core of the EURORDIS’ mission and values. It is believed that the overall situation might worsen, with many people with rare diseases and their carers being unable to travel to another country or access essential medicines and basic necessities in Ukraine and those who are able to leave the country facing challenges related to displacement.

EURORDIS’ response is two-fold: both immediately responding to the needs of people living with rare diseases and advocating on behalf of their specific needs with the support of our multistakeholder networks.

24 February, Paris – EURORDIS-Rare Diseases Europe calls on the international community to prepare for a potential crisis and address the challenges of people living with a rare disease in Ukraine (also in Ukrainian/також українською)

EURORDIS-Rare Diseases Europe stands in solidarity with the Ukrainian people and would like to extend support to the Ukrainian rare disease community. We are calling on the European Union, the United Nations, WHO Europe and other UN agencies, humanitarian organisations and the international community at large to protect the most vulnerable, who are caught in the conflict, unable to flee and without access to humanitarian aid. The current situation should not undermine the reality that the needs of people living with a rare disease are real, huge and unmet.

EURORDIS will facilitate a coordinated effort with European Rare Disease Federations and will support patient organisations in Ukraine as best we can to understand the challenges they are facing and to help policy makers and the international community understand the challenges people living with a rare disease face on the ground.

Useful links and documents

• Can you host a family from Ukraine with a rare disease?
• List of EURORDIS Members in Ukraine
• National Alliances in Europe
• Rare Disease National Helplines

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