All 24 ERNs Unite to Help Ukrainian Rare Disease Patients
All 24 European Reference Networks (ERNs) have launched a dedicated website and social media campaign to collect information to help health professionals to find support for Ukrainian patients with rare diseases: diagnosis, treatment, and advice.
Our health care providers (HCPs), particularly those located in the countries currently receiving large numbers of refugees (Poland, Slovakia, Hungary, Romania) are ready to help Ukranian patients with rare and/or very rare diseases, for specific diagnostic procedures and treatment. Those centers work in close cooperation with the ERNs they belong to.
WE ARE HERE TO HELP!
With the ongoing war, a large number of Ukrainian citizens have difficulty accessing care in Ukraine or are fleeing to EU countries, mainly Eastern ones for the time being. Many of these refugees have, or will have, health problems. In the last few days, EU governments have clearly committed to ensuring adequate healthcare to those refugees, including patients requiring chronic treatments.
Some of those Ukrainian citizens will however suffer from one of the known 6,000 rare diseases, the same as around 6% of the European Union population. For those disorders, that are sometimes very rare, expertise is often lacking in many regions or even countries, and treatments may be very expensive and/or difficult to obtain in many centres.
The 24 European Reference Networks (ERNs) for rare diseases are specialized in the diagnosis and treatment of rare/very rare illnesses in each of their medical specialities. They have member hospitals (healthcare providers, HCPs), often university centres, distributed in most or all EU countries (depending on the ERN), including the EU countries neighbouring Ukraine.