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What we have achieved so far

After speaking with hundreds of our community members and listening carefully to their needs and challenges, it has enabled me to focus the charity's strategy on the patient's pathway and where we could make the biggest difference in people's lives. 

By the end of 2021, this had resulted in 4000 people downloading patient resources like the food bolus obstruction plan and education webinars from leading experts.

Over the past 3-years I have advocated for patients' needs in medical associations such as NICE, BSG, BSPGHAN, CEGIR, ESPGHAN, RCDRN and EUREOS for the improvement of care and treatments. 

Presenting our EOS network's community experience to NICE was commented as an 'incredibly valuable insight for the panel of reviewers' for what is now the first recommended NHS treatment for Eosinophilic Oesophagitis EoE.

I have collaborated with patient groups around the globe to develop and publish a charter on to support wider policy changes.

Achieving great change requires collaborative medical guidelines

I am incredibly proud to have represented the patient's needs as a co-author in the joint BSG and BSPGHAN project for the first British medical guideline for EoE diagnosis and care. This has been accepted for publication and will be available online in June. It was an absolute pleasure to witness the expertise and dedication of the 18 committee volunteers committed to completing this project. 

The charity has also recently launched an awareness campaign informing GP’s, A & E and supplying patients’ support resources to hospitals around the country which we hope will further support the different areas where patients are being lost in the system.

The last 2 years have been a huge success, but there is still a lot of work to be done, and we need our community's help

What's Next?

The next steps are to continue increasing awareness among health professionals so that our finding a Doctor map becomes so full that it is eventually no longer needed and that all hospitals are following the new standards of EoE care.

We have already started exhibiting our information and resources to professionals in allergy and immunology and will soon be at the largest gastroenterology conference in the UK BSG Live 2022

We shall continue to advocate for the much-needed consensus and guidelines for eosinophilic gastrointestinal diseases beyond the oesophagus.

I am sure you will agree we have made quite an impact thanks to our volunteers 

The charity has grown 50% year on year, our website now reaches 5000 new visitors a month seeking information and support, and we have nearly 1000 registered community members.

So far, we have achieved this all on purely volunteer services. As we continue to grow and strive to achieve more for our community, the costs increase, and the workload becomes impossible to manage on volunteer time alone.

We hope our work has made a positive impact on your life or on the life of those you support.

We now need your support to achieve our vision that everyone with an eosinophilic gastrointestinal disease can eat without pain 

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Thank you 

Amanda Chair and Founder

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