News

Rare Disease Week 2021 : save the date !

23 November 2020

EURORDIS (a non-governmental patient-driven alliance of patient organisations) organise the first Rare Disease Week in the lead up to Rare Disease Day 2021 (28 February). The goal of this event is to empower, rare disease patient advocates, with knowledge and […] LEARN MORE

09/11 Kids art auction for OATSA – South Africa

06 November 2020

On the 9th of November, OATSA organize a kids art auction on live, for their first awareness month ! See more about the event   November 2020 is the first awareness month for OATSA, the non-profit company and support group […] LEARN MORE

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

A medical glossary for esophageal atresia

28 September 2020

The French Association of Esophageal Atresia (AFAO) is proud to publish its 1st medical glossary of esophageal atresia in French, produced by Emma Giraudier under the direction of Ms. Pascaline Dury, professor of universities . The result is this small […] 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

Oral feeding difficulties : a notebook to support the families

06 June 2020

To support parents in their child’s oral feeding difficulties,  The French Association of Esophageal Atresia (AFAO) and Alice Avart – therapist specializing in oral feeding difficulties, developed a notebook in 2020, available here: A year of sensory challenges around food […] LEARN MORE

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

06 May 2020

Video from https://www.youtube.com/user/CHUdeNantes/videos 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