I’m honoured to be a trustee director of the amazing Rarer Cancer Forum, so will be posting information about them from time to time: We, at the Rarer Cancers Forum (Foundation) understand more than most how important it is to get the right type of information at the right time and to have confidence in the treatment being offered.
The patient support team regularly undertakes research on behalf of the patient to find specialist centres & clinicians; we will search for clinical trials and information held by rare disease registries worldwide. We offer friendship and emotional support so that patients with rare or uncommon cancers will never feel that they are fighting their battle alone. Quite often we will put the patient and their local medical team in touch with others around the country who may have expertise in particular types of cancer. This is a vital service when patient populations for very rare cancers can be very low.
The patient support team have assisted many patients who have been refused treatments their clinicians wished to prescribe for them. Unfortunately in some areas there still appears to be a postcode lottery, this is despite the creation of the Cancer Drugs Fund. The RCF believe it is unacceptable that any person who is desperately ill should be denied treatment in one area which may be routinely available in another and we continue to campaign both at local and national level to remedy this injustice.