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March 15 2022
All 24 ERNs united to help Ukrainian people with rare diseases
VASCERN and the 24 ERNs stand in solidarity with Ukraine and its Rare Disease community.
The ERNs have launched a new 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’s Border countries and beyond. A central ERN contact point is also available. We will actively disseminate information about this website through all available communications channels.
Our 24 ERNs for rare diseases networks are specialized in the diagnosis and treatment of rare/ very rare illnesses in each of the 24 medical specialties. They include hospitals (healthcare providers or HCP), generally university centers, distributed in most or all EU countries (depending on the ERN), including in EU countries neighbouring Ukraine.
The ERN Coordinators Group have equally released a Statement to support people with Rare Diseases and Complex Conditions affected by the war in Ukraine, which outline several points of action that aim to provide optimal care for Ukrainian patients with rare diseases and complex conditions reaching the EU or who need to be transferred between EU healthcare providers.
“The 24 ERN Coordinators wish to underline their support, in particular, for our fellow healthcare professionals working under horrendous conditions in Ukraine. We stand with them and want them to know that they are not alone and they can contact us via our ERN websites. We, the 24 ERN Coordinators, hereby give our full commitment to help all stakeholders, especially doctors and their rare disease patients in this unprecedented situation and, together in solidarity, we must ensure that no rare disease patient is left behind.”
If you are a patient (and/or family member/carer) with a rare vascular disease in need of assistance, please contact us at firstname.lastname@example.org.
We will be able to help you find the nearest expert center/patient organisation in a bordering country so you can receive support/treatment. You can also download the VASCERN app to see a list of expert centers/patient organisations on your phone.