ERNICA

ERNICA

ERNICA

ERNICA

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European Reference Networks support Ukraine

17 March 2022

  On Monday 14th March 2022, the 24 European Reference Network (ERN) Coordinators issued a statement of support to people with rare diseases and complex conditions affected by the current war in Ukraine. As detailed in this statement, the ERNs have launched a new dedicated website (accessible in most EU languages, in Ukrainian and in Russian) and social media campaign to support patients with rare diseases from Ukraine and their care providers. Each European Reference Network (ERN) is focused on a different rare and complex disease area. Each ERN is made up of expert healthcare professionals from specialised healthcare providers across Europe.  The dedicated website provides a contact point for each ERN, a list of member hospitals and useful links. We are here to help. 

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Esophageal Atresia research priorities

16 March 2022

The Esophageal Diseases working group of ERNICA is identifying the research priorities in the field of Esophageal Atresia. 25 topics have been identified and categorized on importance (first, second and third priority) by the ERNICA Esophageal Diseases working group. We ask all professionals (gastroenterologists, anesthetists, neonatologists, pneumologists, nurses, speech and language therapists, nutritionists, midwives, psychologists etc.) and patient representatives in the field to score the topics on how important the research priorities are to you (1 not important – 9 critical). To get a clear picture on the research priorities in the field, we therefore ask you to complete the survey via EUSurvey - Survey (europa.eu). The estimated time is 10-15 minutes. Please complete the survey before April 15th, 2022. The results will be used to inform future research and might be published (anonymous) in a scientific journal. Completion is voluntary and all data will be stored securely.  Thank you for you input, Frederic Gottrand (co-lead, CHRU Lille) Benno Ure (co-lead, Hannover Medical University) Anke Widenmann-Grolig (ePAG co-lead)

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Support to Ukrainians

2 March 2022

EURORDIS Rare Disease Europe have issued a statement which calls for 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 in Ukraine, who are unable to flee and without access to humanitarian aid: https://www.eurordis.org/content/statement-eurordis-ukraine   Within the Esophageal Atresia patient community, EAT (Esophageal Atresia Global Support Groups) is reaching out to offer support to the Ukrainian national rare disease organisation and various Ukrainian family members who are members of EAT member associations. This includes offering to provide necessary equipment or consumables. The German EA support group KEKS has also offered to host family members at its facility in Stuttgart, and provide logistical support to transport a family from the Polish-Ukraine border. The UK-based EA charity TOFS has supported this effort by donating 1000 EUR to EAT.

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