On 19th October 2019, ASCA Executive Director Agnes and the Co-Founder of the organisation Preston flew to London to attend the 14th ASCAT conference. The ASACT Conference is the largest Sickle Cell Disease (SCD) conference in Europe which showcases the latest advances in diagnosis, treatment and emerging fields in haemoglobinopathies. It is also an opportunity to interact with clinicians and patient groups on the latest advances in clinical care, transition services and emerging new therapies including updates for curative treatment options. This year’s theme was “Sickle cell and Thalassaemia disorders new treatment horizon; while ensuring patient safety and delivering excellence in routine patient care”.
The conference kicked off with a pre-conference patient workshop. This workshop was on a Sunday evening a day before the conference. We were privileged to be invited to this workshop. The workshop was a joint initiative by ASCAT and the Euro BloodNet. It was facilitated by the Oxford Blood group and was sponsored by Novartis, Pharma AG and Global Blood Therapeutics, Inc. The workshop was attended by 28 people from European countries and non-European countries. This was an informal setting getting to know patients from across Europe, UK, USA, South America and some African countries.
The main theme of the workshop was to look at the patient and public involvement (PPI), how and why should patients get involved. During this exercise, patients and carers brainstormed on what research topics clinicians and researchers should concentrate on in order to meet patient expectations. The participants came up with a total of 40 questions out of which the top 10 questions were selected and presented on the first day of the conference.
This conference had on average 18 presenters per day highlighting the latest advances in treatment and emerging therapies in both SCD and Thalassaemia.
ASCA did a poster presentation about Sickle Cell Disease Advocacy in Australia. This poster was authored by Agnes Nsofwa, Nathalie Kapuya, Mayase Jere, Peter Leos, Preston Nsofwa and Sarah Tregenza. In this poster, we highlighted what our association has been doing in the past year. We emphasised our reasons for advocating for SCD in Australia including our objectives. Furthermore, we included our achievements to date and our action plan going forward. The poster is attached here with a few pictures for the event.