A Message from the Co-ordinator
I believe time has gone by quite fast since I became involved with NEBATA, about 26 years ago. I have been heavily involved with NEBATA on a voluntary basis, both as a co-ordinator and vice chairperson. This year we have organised the 17th Annual Awareness Conference. All the past conferences were very successful and proved to be extremely useful for all our members. This helped to improve their lives and achieve a better quality of life through up-to-date information and knowledge to suit their needs. Other activities such as International Thalassaemia Days, Attending Patient and Parents TIF Conferences, Pan European Conferences and Workshops helped to consolidate their knowledge.
NEBATA has worked for almost 15 years in association with the NHS Screening Programme to increase people’s understanding of Thalassaemia. This gave them the information and support vital to making informed choices for themselves and their families. We believe information and understanding is power.
I have spent a life time to develop the most needed support for patients, their parents and families. I am proud to have been able to establish this platform for the thalassaemic community. My message for you is that we must continue to work together to continue our excellent work – we need more volunteers to contribute their time and expertise to bettering the lives of people affected by Thalassaemia.
I would also like to take this opportunity to thank Mr Peter W Mount CBE, chairman of the Central Manchester NHS Trust, who has been patron of NEBATA since 2003 and who retired after many years’ support and advice in 2014. It has been an honour to work with him.
Best wishes for a healthy and happy future to you all.
Mrs. Zanib Rasul, Co-ordinator, NEBATA
NEBATA is committed to helping improve the lives of people affected by Thalassaemia. We empower people with Thalassaemia through information about the disorder and the latest treatments, and work with them to represent their interests at all levels.
Our vision is a world where Thalassaemia presents no obstacles to the enjoyment of a successful and happy life by those affected by the disorder.