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Aylesbury cancer charity represents patients at European level

Aylesbury cancer charity represents patients at European level

Published by Dan Gooding at 8:00am 21st April 2019.

An Aylesbury charity have been meeting international experts to try and improve the lives of people with Lymphoma.

Lymphoma Action, who work across the UK, joined others in Brussels for the meeting, aimed at influencing how care and support are delivered.

The big issues included quality of life and side-effects from cancer treatment.

Members of the European Lymphoma Community Advisory Board (CAB) met for the first time in Brussels earlier this month.

Among them were staff and services users from the Aylesbury-based charity, which is the only one in the UK dedicated to people affected by lymphoma.

Representing the charity on the international stage was Stephen Scowcroft, Lymphoma Action's Head of Business Development, and three people living with lymphoma who have benefited from the charity's services, such as its support groups, buddy network and helpline.

Stephen explains:

"CABs exist for specific, particularly rare, health conditions and are an important part of empowering the people who live with those conditions to influence developments in research, treatment and care.

"CABs can help ensure that governments, pharmaceutical companies and regulatory authorities are responding to and meeting the evolving needs of people with the condition in question.

"I'm so pleased we now have a European CAB for lymphoma - and it's a huge privilege to be one of the members representing the 125,000 people currently living with lymphoma in the UK."

The aim of this lymphoma-specific CAB is to represent everyone affected by lymphoma, despite variations in diagnosis, treatment and aftercare across Europe. While each member brings their own personal experience and knowledge to the group, they need to understand other patients' experiences and perspectives.

This ability to empathise is especially important in lymphoma because of the complexity of the condition: there are over 60 sub-types of lymphoma, each with different treatment protocols and prognoses.

Stephen and his colleagues used the international platform to raise and discuss issues such as quality of life, side effects of treatment, access to clinical trials and educating healthcare professionals about the condition.

"Our involvement means we can influence developments in lymphoma research and treatment; make that treatment more accessible and affordable for those that need it and raise awareness of lymphoma amongst healthcare professionals - who may only see one or two cases of lymphoma during their career, despite its prevalence."

For more information about lymphoma, visit the charity's website at www.lymphoma-action.org.uk

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