What we do
Support and advice group sessions: We work in the community by providing sessions where parents can meet up and discuss their experiences of Thalassaemia. Group sessions have been shown to be effective because it allows parents to meet other parents whose children are facing the same difficulties in life. Sometimes all it takes is a little reassurance to create cohesion between affected individuals. Knowing that you are not facing this challenge on your own is a very powerful motivational tool and helps families to cope a little better and they are able to see a positive future.
Awareness publications:NEBATA produces information leaflets which have been translated into the community languages, to aide accessibility of information. We also produce a regular report of activities which can be accessed in our reports and publications section of the website. Our current leaflets are under review, with new editions to be produced soon.
Awareness events: NEBATA organises events that are aimed at increasing knowledge and awareness about Thalassemia in the general public. We believe education is a very important element for patients to be able to get the best care; this is delivered through NEBATA’s Annual Thalassaemia Awareness Conferences. Not only does NEBATA host national conferences but we support patients to attend the international conferences on Thalassaemia. A part of our awareness campaign and as a patient representative to the Sickle Cell and Thalassaemia Screening Programme, we deliver information about the Screening Programme, with the aim to improve uptake of the newborn screening and individual screening. NEBATAs events are always free and open to the public and we strive to continue to provide free access to information and an ever building network of those affected by Thalassaemia.
Moral support: NEBATA has a close relationship with patients and their families and having been founded by parents of children with Thalassaemia it is key to the work we do to ensure parents have a network of people to talk to and ask questions.
Weekend trips: Here at NEBATA we understand that children just want to lead as normal lives as possible.We try to help by providing trips to share experiences, boost morale and give them and their families a chance to bond with others in a relaxed and non-clinical setting. we hope to allow patients to forget their problems for a short time and really enjoy themselves regardless of Thalassaemia.