SIOPEN AGM, Jerusalem, October 2018

SIOPEN AGM, Jerusalem, October 2018

The International Society of Paediatric Oncology, European Neuroblastoma (SIOPEN), is the grouping of neuroblastoma clinicians from Europe and other affiliated countries. Their major yearly meeting is the Autumn AGM, this year hosted by Dr Isaac Yaniv and Dr Shifra Ash in Jerusalem. Here we report on the major themes of the meeting, focusing on current and recent clinical trials run within SIOPEN.

Scottish Medicines Consortium approves Dinutuximab beta

We very much welcome the decision by the Scottish Medicines Consortium (SMC) to approve the use of Dinutuximab beta for children with neuroblastoma in Scotland.

Read the full press release below:

NBUK statement on SMC decision to fund Dinutuximab beta for children

Neuroblastoma UK has welcomed today’s announcement by the Scottish Medicines Consortium (SMC) that it has approved Dinutuximab beta for funding in the NHS in Scotland.

Dinutuximab beta is used to treat high-risk neuroblastoma, a rare and life-threatening disease affecting around 50 children in the UK each year and a clinical research trial showed Dinutuximab beta was effective in increasing survival for these patients.

Chair of Neuroblastoma UK, Tony Heddon said ‘This is fantastic news for the families in Scotland of newly diagnosed children with this cancer and ensures that they will receive the same standard of care as other children in the rest of the UK’.

Tony Heddon, Chair of Neuroblastoma UK added “It is imperative that children have access to the latest treatments and that we continue to invest in research into this terrible disease. Through doing so we will improve survival from 40% to 85% as has been achieved in childhood leukaemia.”


Notes for Editors:

Dinutuximab beta is a monoclonal antibody used as second-line treatment for children who have high-risk neuroblastoma, which has an increased chance of coming back. The drug works by binding to GD2, a glycolipid, which is present in high amounts on the surface of neuroblastoma cells, but not normal cells. When Dinutuximab beta attaches to the neuroblastoma cells, it makes them a target for the body’s immune system, which then kills the cancer cells.

Dinutuximab beta was approved by the European Medicines Agency in May 2017 and by the National Institute for Health and Care Excellence (NICE) in July 2018.

Neuroblastoma UK is a charity funding research into neuroblastoma to find a cure and deliver new, effective, and kinder treatments.

  • Neuroblastoma is an aggressive childhood cancer, with 1 in 6 of all children’s cancer deaths due to Neuroblastoma.

  • Neuroblastoma is the second most common solid tumour in childhood and the most frequent single type of cancer in the first year of life.

  • Research for a cure is largely dependent upon funding provided by charities such as Neuroblastoma UK, who is a major funder of research into Neuroblastoma, and has funded £5M worth of research in the UK.

  • Since Neuroblastoma UK (formally The Neuroblastoma Society) was established (1982), 5-year survival of children aged 1 – 14 years old with Neuroblastoma has doubled from 34% to 68%.



For Neuroblastoma UK:   Alastair Whitington,, 07939 507798

                                         Tony Heddon,


Neuroblastoma charities unite to beat cancer

Neuroblastoma charities unite to beat cancer

After working with the great team at Smile with Siddy supporting research projects together, we are pleased to announce they are joining us at Neuroblastoma UK.

Formalising our collaboration means that we combine our respective strengths and shared belief of driving forward research. We are also delighted that Flora Cahill, Chair of Smile with Siddy, will join Neuroblastoma UK as one of our trustees. Flora brings a wealth of fundraising expertise and driving awareness of neuroblastoma to enable us to continue fund ground breaking research

Message from our outgoing Chair

Message from our outgoing Chair

Research Trustee Guy Blanchard took on the role of Acting Chair in January 2017, to drive forward our role in funding the best UK collaborative research to find new and kinder treatments so that all children survive neuroblastoma.

We are enormously grateful to Guy for taking on this position and for his calm and thoughtful leadership and we send our thanks to him.  As he returns to his research role, we look forward to his continued contribution to the charity.

Read more about his time as Acting Chair and why his priority is to ensure we remain an independent and experienced voice to represent children with this devastating disease.