Annual meeting of @ernica_ern: over 50 reps from healthcare providers from 25 EU countries & 10 patient reps from NL, UK, and DE gathered at University Hospital Wroclaw. Discussions ranged from nutrition in pediatric #esophagealatresia to transitioning care for adults.
Bronchiectasis Patient Conference 2024:
Saturday 23 March 2024 from 10:00 to 16.00 CET. @EuropeanLung and @EMBARCnetworkonline present the annual bronchiectasis patient conference.
Register here: https://t.co/UR16AAAuSD
The joint meeting of the International Network of Esophageal Atresia (INoEA), the Pediatric, Adolescent and Adult Foregut Interdisciplinary Society (PAAFIS), and @aerodigestive will be held in Istanbul, Türkiye between April 30 and May 3, 2025. More: https://t.co/9qzY5DtDh2
From Volunteer Awardee 👉 Board Member!
Read our interview with Graham Slater where we discuss his journey into advocacy and the importance of volunteers in the rare disease community!
💜https://t.co/Akd4bF3XPJ
Nominations now open for🌟#EurordisAwards2024@eatfederation
We are very proud to announce that Graham Slater, former chair of EAT, was elected a member of the board of @EURORDIS, the alliance of over 1,000 rare disease patients organisations in Europe! Congratulations, Graham! #ESPHGAN23#esophagealatresia#raredisease
Forging new connections: Only 0.5 % of babies are born with a congenital disease, but 40 % of babies with #esophagealatresia are premature. Yesterday we were meeting up with Silke Mader, founder of @EFCNI, at #ESPHGAN to raise awareness for our cause.
We are delighted to be at the #ESPGHAN23 patient forum. Together with @TOFS, our chairwomen @keks_awg represents the interest of patients with #esophagealatresia amongst medical professionals.
https://t.co/QuUcQRE5CS
Prospective cohort of adolescents born with esophageal atresia in order to assess the long-term health outcome #TransEAsome#esophagealatresia#cracmo#afao
Eberhard Schmiedeke, paediatric surgeon in Klinikum Bremen-Mitte, Germany, and Dalia Aminoff, head of AIMAR, the Italian patient organization for ARM, about the Advantages of centralization of care: https://t.co/nw3lz4YNSo
Did you get your #LondonMarathon#ballot place? If you did, we’d love you to join our team♥️!
Not successful? Apply for a TOFS #charity place & support people born unable to swallow🏃♀️
https://t.co/07uMXRn7bZ
Congratulations to TOFS' Trustee, Graham Slater on being awarded the Esophageal Atresia World Award from @eatfederation. This is Graham's 2nd award this year. #ea#oa#tof#tef
https://t.co/tMIhONStWu
The #QUAD2022 conference was a great success! We, as experts by experience, are glad to share our knowledge and challenge the medical experts to move together from Good Practice to Best to Next Practice when treating #esophagealatresia. See you at the next conference in 2025!
We are attending a major international medical conference on #OA/#TOF in Cincinnati this week. TOFS’ representatives have joined forces with our colleagues from @eatfederation and are looking forward to taking part and engaging with medics from across the world #QUAD2022#ea#tef
Dr. Corné de Vos, Pediatric Surgeon at Tygerberg Children‘s Hospital, Cape Town, explains at the #QUAD2022 conference what the most important value of patient support groups is for her. #esophagealatresia