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All 24 ERNs united to help Ukrainian people with rare diseases

Share it with #ERNcare4Ua
All 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.
Our health care providers (HCP), particularly those located in the countries currently receiving large numbers of refugees (Poland, Slovakia, Hungary, Romania) are ready to help Ukranian patients with rare / 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 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.


Our ERNs have strong relationships with industrial partners manufacturing drugs for rare illnesses, potentially allowing easier access to some rare and/or expensive drugs. They also cooperate daily with patient support groups at each country’s level, which have a good knowledge of local situations to manage rare diseases. Those patient groups work under the umbrella of European patient advocacy groups, especially EURORDIS. For other useful links, please check the dedicated page.

Here a short video describing the website

 
Please don’t hesitate to contacting us for patients in need of highly specialized diagnosis or treatment for their rare disease.
Visit the dedicated website
Share it with #ERNcare4Ua
European Reference Networks
erncare4ua@protonmail.com

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