Reporting back from the CLL Horizons 2019 conference

Sharon, Senior Information and Support Officer in our Information and Support Team, reflects on her attendance at the CLL Horizons 2019 conference in Edinburgh in September. 

CLL Horizons group photo 2019

Photo shows a group of delegates at the conference.

The CLL Horizons 2019 conference was organised by the CLL Advocates Network to bring together patient representatives and organisations supporting people affected by chronic lymphocytic leukaemia (CLL) to:

  • Learn about the disease, treatments and latest research from leading doctors.
  • Hear from fellow advocates on key topics, including awareness, education and drug access.
  • Meet and network with others doing similar work, giving them the opportunity to discuss issues facing CLL patients.

There were over 50 attendees from all around the world - representing over 20 different countries including France, Italy, Spain, America, Australia and India to name but a few!

In my role I have regular contact with people who may be going through difficult times, whether this is at diagnosis, treatment, or living with and beyond lymphoma. It was very insightful to hear the challenges facing individuals in other countries, with regards to access to treatment, funding, as well as difficulties living in rural communities. There were differences, but many similarities too - particularly around the emotional impact of a diagnosis and managing active monitoring (watch and wait).

It was a good opportunity to meet others doing a similar role to me and to share information about how we support individuals facing these challenges. It was helpful to hear from other organisations about their experiences, to share ideas and drive forward good practice. 

Did you know around 10 people every day in the UK are diagnosed with CLL and SLL?

CLL booklet

We have a dedicated booklet about CLL and SLL which explains how they are diagnosed, treated and managed and includes tips on living with these conditions. It has been reviewed by experts and people living with CLL and SLL and includes quotes of them sharing their experiences. There is also space for notes and prompts of questions to ask so it's a practical resource. Download the booklet here or order a printed copy for free via our online shop.

We also have a playlist of videos on YouTube, which includes films with Dr George Follows, Consultant Haematologist at Cambridge University Hospital, explaining the conditions and talking about treatment and people personally affected by CLL and SLL sharing their stories.

16 October 2019