Rare Disease Day, 29th
We are expecting that NHS England will give their decision on whether the NHS in England will fund Everolimus for TSC patients with SEGA’s and AML in March. We want the voices of people with TSC to be heard, and we need your help.Rare Disease Day, 29th February 2016.
Born To Be Different, 1st March
Born To Be Different is a documentary series that follows the lives of five children born with disabilities .
Watch the trailer for the episode here:
Tweet about the programme using our #Fight4Treatment
Take action now
The financial year for the NHS ends on the 31st March, and the two draft policies for the prescribing of Everolimus for TSC are in the final stages of consideration by NHS England. We now need to remind policy makers and politicians of the commitment made by NHS England last summer to develop these policies within their financial year. We need to ensure that these policies have no further delays.
• Say who you are and where you live
• Give your contact details
• Tell your MP why access to Everolimus for TSC matters to you
• Mention the TSA
• Forward your correspondence and any response to us so that we can follow up with those MP’s to firstname.lastname@example.org
Please find below the press release for the Davis family. Mum to William, who has TSC is available for comment and interview. We also have photographs of the family available on request.