The NHS is now carrying out a consultation on the provision of Everolimus to treat SEGA tumours.
It is very important that as many people as possible within the TSA community in the UK – people with TSC, family, carers, friends and colleagues – respond positively to this consultation as soon as possible. The deadline for all responses to be submitted is March 27.
To have your say is easy. All you need to do is CLICK HERE which will take you to the consultation home page.
There you will find key documents about Everolimus and SEGAs at the bottom of the page (there are a number of issues being consulted on at the same time in this survey). Then you need to click on the big button at the very bottom of the page which says ‘Give Us Your Views – Online Survey’
What you say in this consultation will help to influence NHS England and how easy they make it for people with TSC to access this drug. The fact that a policy has been developed at all is a result of 3 years lobbying and campaigning by the TSA. Your responses to this consultation are therefore absolutely vital.
Please also spread the word about this consultation online and offline (talking with friends and family, for example) and share it as widely as you can.
Thank you in advance for all your wonderful and continued support. #Fight4Treatment
