ABEFAO

Association belge des familles touchées par l'atrésie de l'oesophage / belgische vereniging voor families getroffen door slokdarmatresie

[ABEFAO @abefao]

Cursus reanimatie in Brugge op 26/10 en Maasmechelen 27/10: meer info op onze FB pagina!

[ABEFAO @abefao]

Interesting results about quality of life survey for adult EA patients - thanks to the italian FATE association #EAconference

[TOFS @NEWSFORTOFS]

TOFS trustee and @eatfederation chair Graham Slater with @ReneWijnen presenting about @ernica_ern in Europe at the #EAConference

[ABEFAO @abefao]

One of ERNICA s project: working on the patients journey #EAConference

[ABEFAO @abefao]

Key word linked to self care: education! And support of family, school.. and of course medical team and nurses. #EAConference

[ABEFAO @abefao]

Self care to improve quality of life: health professionals to empower individuals with chronic diseases to self manage their illness process, making them protagonists of care through co-responsibly among all involved #esophageal atresia

[EAT @eatfederation]

Welcome at the 5th international conference on esophageal atresia

[ABEFAO @abefao]

Our fifth Family Day is over.. thanks to our members who shared this day with us, and to pr Y.Vandenplas and dr T. Mahler for their atelier #RareDisease #Esophageal Atresia @eatfederation

[EURORDIS-Rare Diseases Europe @eurordis]

Have you heard about the new European Platform on Rare Disease Registration? Its aim is to make rare disease patient data in 100s of registries across Europe more accessible to enable the use of data for diagnosis and treatment. https://t.co/mpG0EgXgRr

[ABEFAO @abefao]

Our next family day is planned on Sunday April 28th! ( French and Dutch) More information and registrations: https://t.co/9Ul5r6hkoY @eatfederation

[ABEFAO @abefao]

D Day today... Rare disease Day ! Want to know more about oesophageal atresia and ABeFAO... just have a look!#RareDiseaseDay https://t.co/W9kNh8TgHQ

[ABEFAO @abefao]

La journée des maladies rares c’est demain! Ca représente quoi, vivre avec une atrésie de l’oesophage? Louise vous l’explique...#RareDiseaseDay https://t.co/lkprp9imQ8

[ABEFAO @abefao]

Rare Disease Day is coming/ Dag van de zeldzame ziektes: vandaag vertelt Charlotte ons hoe ze met slokdarmatresie leeft #RareDiseaseDay https://t.co/vWCdgLbp3d

[ABEFAO @abefao]

Status of the rare disease plan in Belgium by minister of health Maggie De Block (during member day RadiOrg)

[Rare Disease Day @rarediseaseday]

Did you know a version of the #RareDiseaseDay 2019 poster with a white block has been designed for you to write on the details of your Rare Disease Day events? Available to download now https://t.co/THheSir2jm

[APF France handicap @apfhandicap]

☝️ Handicap n’est pas toujours synonyme de fauteuil roulant. ♿️
➡️ La reconnaissance du #handicap invisible est essentielle pour que les personnes qui en souffrent soient comprises et puissent bénéficier d’aides adaptées. #RendreVisible

[ABEFAO @abefao]

Le programme de notre journee des familles du 28/4/2019 est finalise! Ateliers sur le reflux et la douleur, echanges entre membres..:Allez voir sur https://t.co/9Ul5r5ZJxq ou Facebook ABeFAO @eatfederation @abefao

[Association AFAO @afao_asso]

https://t.co/JcWuo3p98u

Le PNDS sur l'atrésie de l'oesophage a été réactualisé . Il préconise la nécessité d'un suivi tout au long de la vie adulte.

[FIMATHO @FiliereFIMATHO]

Le nouveau #PNDS atrésie de l’œsophage rédigé par le #CRMR #CRACMO avec l'aide de @FiliereFIMATHO vient d'être publié !
Il s'agit d'une mise à jour du PNDS initialement rédigé en 2008.
Plus d'informations : https://t.co/ZhhfLHrPd2
#MaladiesRares #AO #atresieoseophage @afao_asso

[ABEFAO @abefao]

Read more about EAT and its interaction with the national support groups

[TOFS @NEWSFORTOFS]

Successful collaboration between TOFS and @eatfederation benefits #TOF/#OA/#EA patients worldwide.
Read more about how our Trustee Graham has been networking with EAT and other European organisations to benefit our members: https://t.co/nKK3cAgAqE