Care recommendations for the respiratory complications of esophageal atresia-tracheoesophageal fistula

26 October 2020

The International Network of Esophageal Atresia, Respiratory Complications Working Group has published a new article to “provide a framework for the diagnosis and management of the respiratory complications that are associated with the [Tracheoesophageal fistula (TEF) with esophageal atresia (EA)]. […] LEARN MORE

The Universal Health Coverage for Rare Diseases

10 October 2020

RDI and EURORDIS have partnered to develop the Universal Health Coverage for Rare Diseases (UHC4RareDiseases) campaign. The campaign aims to enable patient organisations and the public to call for Universal Health Coverage (UHC) policies and programmes that include rare diseases. The #UHC4RareDiseases toolkit offers […] LEARN MORE

Fanny-Selena Prize 2020

26 August 2020

Due to the rare nature of esophageal pathologies, research project that aim to improve awareness and the treatment of these pathologies are few and far between. Since 2007, the French Association for esophageal atresia (AFAO – Association Francaise de l’Atresie […] LEARN MORE

How to Put on and Remove a Face Mask? / COVID19

06 May 2020

Video from How to put on a face mask? Clean your hands with soap and water or hand sanitizer before touching the mask. Remove a mask from the box and make sure there are no obvious tears or holes […] LEARN MORE

EAT General Assembly April 2020

06 May 2020

20 representants of 11 different countries (from 4 continents) were present at the last general assembly in April 2020 (zoom meeting). EAT, an international federation for families concerned with esophageal atresia, is always on the board #exchange #collaboration #information

Useful EA terms in various languages

05 May 2020

Terminology Glossary Turkish Spanish   Swedish   Italian  German   French  Dutch Swedish  

A patient journey for an esophageal atresia patient: the proposal of ERNICA

02 May 2020

Article from the ERN-wide European Commission newsletter Using a unique methodology to map an esophageal atresia patient’s journey, ERNICA is highlighting key issues and areas of good practice. Esophageal atresia (EA) is a rare congenital condition with an estimated prevalence […] LEARN MORE

Esophageal Atresia COVID-19 – EAT – Patient reported outcomes study

16 April 2020

The COVID-19 Coronavirus is already the subject of scientific and medical research and we can expect more studies to be commissioned. Many of these studies will consider the epidemiological aspects of the virus and there will also be clinical studies […] LEARN MORE