Failure of the NHS to fund access to medicines to treat rare conditions such as Tuberous Sclerosis is a major ongoing issue.   Today the Genetic Alliance UK have launched a landmark Patient Charter that highlights the concerns patients have about the new approach the Government and NICE are using to evaluate medicines for rare conditions. 
The Charter makes 29 recommendations for change central to which is that the patient voice must be heard.  The Charter also calls for clarification of how the NICE process fits into the wider decision making framework for commissioning and for steps to be taken to ensure the process of evaluation of rare disease medicines is transparent and fit for purpose.
Our CEO, Jayne took part in the workshop that informed the new Patient Charter and we have endorsed the report alongside a further 76 patient groups.  This is the first time so many patient groups have come together to set out a united case for change. 
You can download a copy of the Patient Charter here

Jayne @Jayne451 is attending a launch breakfast you can follow all the action #HSTcharter