Information
What is Neuroblastoma?
Neuroblastoma is a malignant (cancerous) tumour that develops from nerve tissue forming part of the sympathetic nervous system. Despite its label as 'rare' or even 'extremely rare' Neuroblastoma is in fact the most common extracranial solid tumour cancer in childhood, and the most common cancer in infancy. Neuroblastoma may be a single disease in name, but it exhibits a wide variery of clinical behaviours. In very young infants it can undergo spontaneous regression, whilst in older children it is often resistent to intensive multimodal therapy.
Neuroblastoma diagnoses are classified as low, intermediate or high-risk. The high-risk form accounts for roughly 50% of those diagnosed, and it's this sub-group that are difficult to treat successfully. Intensive treatment comprises chemotherapy, surgery, high-dose chemotherapy with autologous stem cell transplant, radiotherapy, retinoid therapy, and immunotherapy. Despite this in many cases disease remains at the end of treatment, or relapse occurs sometime afterwards.
The following sites provide more information:
Who are The Neuroblastoma Children's Cancer Alliance UK?
The Neuroblastoma Children's Cancer Alliance UK (formed out of The 2Simple Trust) are a registered UK charity (Registered No. 1135601) supporting children and families affected by neuroblastoma by providing financial assistance for treatment that would otherwise not be available. In most cases this means funding treatment abroad.
There are a lack of options in the UK at present for children whose disease does not respond well enough to standard protocols, or recurs following the end of such treatment. There are many more clinical trials available outside the UK, predominantly in America, that provide continued hope. There are no guarantees, such is the nature of both the disease and these early phase clinical trials. But in some cases long-term stability, or even a cure, can be achieved in children for whom the UK can offer only palliative treatment.
The more money that is raised for the charity the more children it can help.
The charity also issues grants to fund research into neuroblastoma, in the search for more effective treatments for this terrible disease.
Adam's Appeal raises money under the auspices of The Neuroblastoma Children's Cancer Alliance UK (NB Alliance UK).
External Links
NBGlobe - Neuroblastoma news from around the globe. The most comprehensive internet resource for anybody with an active interest in neuroblastoma. Contains information on the latest research, trial news, publications, presentations, conferences and much more.
N-BLASTOMA listserv - The largest support group of neuroblastoma parents and carers hosted by the Association of Online Cancer Resources (ACOR). N-BLASTOMA is an active online group where questions can be posted, notifications are sent directly to your registered email address, and there is also a fully searchable online archive of historic posts.