The 24 European Reference Networks (ERNs) launch 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, advice.
WE ARE HERE TO HELP!
With the ongoing war, a large number of Ukrainian citizens have very difficult access to care in Ukraine or are fleeing to EU countries, mainly Eastern ones for the time being. Many of those refugees have or will have health problems. EU governments have in the last few days clearly committed to ensure adequate healthcare to those refugees, including patients requiring chronic treatments.
Some of those Ukrainian citizens will however suffer from one of the known 6000 rare diseases, like about 6% of the European Union Population. For those disorders, 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 centers.
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.
Visit the dedicated website to get information how to reach the ERNs: #ERNcare4Ua
Concerning patients with rare kidney disease:
We are very concerned about the escalating and devastating crisis in Ukraine. Many refugees suffer from rare diseases and require specialized care.
In solidarity with the Ukrainian people, our ERKNet centres in border countries are ready to offer medical services for those who need specific treatment, including dialysis and posttransplant care.
Poland:
Cracow – University Children's Hospital of Cracow | Contact: Dr. Dorota Drodzd (ddrozdz@usdk.pl)
Lodz - Instytut "Centrum Zdrowia Matki Polki" (Polish Mother's Memorial Hospital) | Contact: Dr. Marcin Tkaczyk (marcin.tkaczyk45@gmail.com)
Gdansk - University Clinical Centre Gdansk | Contact: Dr. Aleksandra Żurowska (azur@gumed.edu.pl)
Other pediatric nephrology centers in Poland: contacts on website www.ptnfd.org
Lithuania:
Vilnius - University Children`s Hospital Santaros Klinikos | Contact: Dr. Augustia Jankauskiene (augustinajankauskiene@yahoo.com)
Romania:
Bukarest - Fundeni Clinical Institute | Contact: Dr. Adrian Lungu (adilungu@mediakompass.ro)
Hungary:
Budapest - Semmelweis University | Contact: Dr. Kálmán Tory (tory.kalman@med.semmelweis-univ.hu)
