Why do we exist?
Esophageal atresia (EA) is a rare medical condition with an incidence of 1 in 3500 live births.
With esophageal atresia being such a rare disorder, it’s only by sharing knowledge, experience and resources that we can improve the management of the EA condition.
EAT exists to ensure that its members associations share their knowledge and experience with each other and to address issues associated with Esophageal atresia which can be more effectively tackled internationally.
Whilst there are some local differences in the way in which the national support groups are organized and focused, there is an overwhelming commonality in most of the issues they face.
These common issues include:
- the growing number of EA Adults who require ongoing support,
- the complexities of transitioning patients from paediatric to adult care and the absence both of consistent after-care standards and in the way in which certain aspects of the EA condition are medically defined.
- the improvement on ongoing education of patients
- a lack of medical protocols for care and follow-up in some countries
- limited research
At the current time, the key activities upon which EAT is focused in order to address these issues include:
- Promoting scientific research into, and education and awareness of, the EA condition
- Conducting surveys of those affected by EA (patients and their families)
- Identifying and exchanging best practices and information
- Promoting the provision of a consistent high standard of after-care across Europe for EA patients
- Supporting those affected by EA in countries without a support group and supporting the establishment of support groups in such countries
- Promoting the exchange, in particular of teenage and young EA adults, with other families similarly affected, and the fostering of youth groups for such persons at a European level
- Collaborating with the professional medical community through organisations such as the International Network on Esophageal Atresia (InoEA)
Graham Slater, Chairman of EAT.
06/10/2013