ERNICA

ERNICA

ERNICA

ERNICA

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Call for projects on esophageal atresia!

18 May 2020

Upcoming deadline Since 2007, the French association for esophageal atresia (AFAO – Association Francaise de l’Atresie de L’Oesophage) has launched regular calls for research projects on the topic of esophageal atresia! Funding (The Fanny-Séléna Prize) is awarded in memory of two girls who passed away as a result of the disease. Click here for more information The deadline for applications is 8th June 2020   

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ERNICA COVID-19 statement

13 May 2020

Last updated 13-05-2020.  The current situation with the COVID-19 pandemic is a significant global challenge. We understand that patients with rare inherited congenital digestive (and gastrointestinal) disorders and their families may have concerns about their health at this time. There may be particular concerns surrounding those disorders with pulmonary involvement, such as Esophageal Atresia and Congenital Diaphragmatic Hernia. With the uncertainty surrounding the virus, it is not possible for us at this stage to provide concrete, disease-specific advice to our patient community. However, we encourage patients to follow the guidelines given by the World Health Organisation and your National authorities and stay on the side of caution.  We have received some new information concerning COVID-19 and children. There has been an apparent rise in cases presenting with a multi-system inflammatory state requiring intensive care. There have been some COVID-19 cases with common overlapping features of Toxic Shock Syndrome and atypical Kawasaki Disease. This is recognised in a recently published article by staff at the Evelina Children's Hospital, London in the Lancet (May 6, 2020). The intention of the article is to highlight this finding to the wider pediatric community to support early identification and management:  https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)31094-1/fulltext The COVID-19 patients we are aware of so far with rare and/or complex diseases covered by ERNICA have experienced mild symptoms. We will continue to monitor the situation and update this statement with any identified recommendations. We would be grateful to be informed of any identified cases. Please let us know by emailing ern-ernica@erasmusmc.nl  (No personal / medical data should be emailed). For Esophageal Atresia specifically: The International Network of Esophageal Atresia (InoEA) has launched a COVID-19 Esophageal Atresia survey for completion by healthcare professionals: http://www.inoea.org/ EAT (The Federation of Esophageal Atresia and Tracheo-Esophageal Fistula Support Groups e.V) has launched the COVID-19 Esophageal Atresia Patient Reported Outcomes survey for completion by patients themselves: https://www.we-are-eat.org/news/esophageal-atresia-covid-19-eat-patient-reported-outcomes-study/ We also understand that ERNICA members may be required to divert their focus to the COVID-19 effort. It is our intention to continue with ERNICA activities where possible but remain flexible over this very difficult period. As part of the European Commission response to this pandemic, a web conferencing support system for the clinical management of COVID-19 patients (COVID19-CMSS) has been set up to support all EU hospitals treating complex COVID-19 cases. The system provides a fast-tracked route for clinicians to discuss complex COVID-19 cases across borders. The scope of the system is not to address the strategic, organisational, logistical and public health (epidemiological or surveillance) aspects, but to focus exclusively on supporting clinicians in their daily practice. Information about cases will not be recorded or kept on the system. The system has been offered to the competent national authorities represented in the Health Security Committee of the EU and appropriate clinicians are being identified and supported. Follow the links to access the COVID19-CMSS factsheet and privacy statement. Clinical Patient Management System (CPMS) accounts (including ‘guest accounts’ for non-ERNICA centres) can still be used to virtually discuss rare disease and complex cases, with or without a possible connection to the COVID-19 infection. We will support this process. Sending you well wishes at this difficult time. Prof. dr. René Wijnen (ERNICA coordinator)  

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ERN-wide newsletter & ERNICA entry!

29 April 2020

The ERN-wide European Commission newsletter (April 2020) is now available! Click here to read.  Items include: ERNs and COVID-19, interviews with key players, news from the ERN community & good practices and inspirational stories. Check out the article written by ERNICA patient representatives titled 'A patient journey for an esophageal atresia patient: the proposal of ERNICA'  Click here to subscribe for future ERN-wide newsletters.     

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