EURORDIS (European Organisation for Rare Diseases) is conducting a survey into the difficulties people are facing in accessing treatment for rare conditions. The survey is in the form of an anonymous questionnaire. Short answers are preferred. The data collected from across Europe will be used to produce reports to National Health Services. You will be able to read the outcomes of this campaign on the EURORDIS website ( The report may be helpful to the TSA in making the case for improved access to treatment for TSC in the UK. To take part in the survey click here: