Rare Disease Day, 29th

February 2016

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.

Throughout Rare Disease Day we will be using social media to send our #Fight4Treatment message to as wide an audience as possible. Please follow us, repost and retweet our messages while we have the UK wide spotlight on #RareDiseaseDay. Tell your friends, supporters, MP’s and influencers why the funding of this medicine is an important issue for you.  
Remember to use our #Fight4Treatment #RareDiseaseDay in all your posts. 

Follow us: 
Twitter @UKTSA
Facebook  facebook.com/thetsauk

Born To Be Different, 1st March

New series showing at 9pm on Channel 4 
Born To Be Different is a documentary series that follows the lives of five children born with disabilities .
This episode features the Davis family, and their son William who has TSC. Follow the moving story of William, as his health deteriorates and his family face a battle with NHS England for the medicine he needs. 

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. 

You can help by writing to your MP today

You can find your MP and how to write to them here: www.writetothem.com 

When writing to your MP please remember to:
• 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 social@tuberous-sclerosis.org 

You could also post your letter to your MP to our Facebook page to share with the TSC community. 

Media release

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.

Download the press release for the Davis family here:{module_literature filter=”item” itemId=”139218″}

For media enquires please contact:


Sarah Roberts, Communications Officer
Email: sarah.roberts@tuberous-sclerosis.org
Phone: 07870 210 308


Emma Damian-Grint, Head of Fundraising & Communications 
Email:: emma.damian-grint@tuberous-sclerosis.org
Phone: 0114 270 1723