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      • Meet your research committee
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    • TSA research
      • TSA-funded research
        • 2022 TANDem seed grant award round
      • TSC Research Volunteer Network
        • TS2000: Tracking TSC throughout life
        • BEE-PP project / BEE study
        • EDiTS study
        • CoIN study
        • The e-SNORE project
        • ACT in TSC trial
      • TSC research from other groups
      • Researchers in focus
    • TSC conferences
      • International TSC Research Conference 2021
        • ITSCRC 2021: Community recap
      • TSC Research Symposium 2020
  • Get involved
    • Our community events
      • Big Day 2025: Our biggest annual event
      • Outlook 2025: For adults mildly affected by TSC
      • TSA Together: Events by the TSC community, for the TSC community
      • TSA virtual and in-person events
    • Donate
      • Donate to the TSA
      • Regular Giving
      • Gift Aid
      • How your donations help
      • Corporate partnerships and giving
        • Give as you earn with payroll giving
        • Meet our corporate supporters
      • Give in remembrance or celebration
      • Leave a legacy
    • Fundraise
      • Fundraise for us
      • Challenge events
      • Fundraising resources
      • Ways to fundraise
      • TSA fundraising campaigns
        • Superhero Summer
        • TSA Dog Jog
        • Room to Breathe – Branching Out for the TSA
        • TSA Lottery
        • TCS London Marathon
      • Fundraising champions
    • Join the conversation
      • Join TSA Voices: Share views quickly and easily
      • Getting to know you: Our ongoing survey
      • Share your story or expertise
      • Community groups and other groups
  • About the TSA
    • Keep updated
      • Sign up to our e-newsletter and monthly magazine
      • News and campaigns
      • Sign up to receive TSA updates
    • About us
      • Mission and vision
      • Meet your team
      • History of the TSA
      • Annual reports
    • Contact us
      • Click here to talk to us
      • Update your information
  • Information & support
    • TSC Overview
      • What is TSC?
      • Diagnosis
      • TSC and genetics
      • Treatment and management
    • Get help and support
      • Contact the TSA Support Line
        • Meet the TSA Support Line Advisers
        • TSA Support Line feedback form
      • Carer information and support
      • How to be referred to an NHS TSC clinic
        • Find a local NHS TSC clinic
      • TSA video hub
      • Access benefits and financial aid
        • TSA Support Fund
    • How TSC affects the body
      • Physical effects
        • Epilepsy
        • Brain
        • Heart
        • Lungs
        • Skin
        • Eyes
        • Kidneys
        • Other areas
      • Wider effects (TAND)
        • Intellectual ability
        • TSC-Associated Neuropsychiatric Disorders (TAND)
        • Sleep problems
  • Life with TSC
    • Living with TSC
      • TSC stories
      • New diagnosis
      • Living well
      • Siblings
      • Education
      • Employment
      • Housing
      • Holiday and leisure
    • TSC at different life stages
      • TSC and family planning
      • When TSC is suspected or diagnosed during pregnancy
      • Early years and childhood
      • Adolescents and transition to adult life
      • Women’s health
      • Adult life
      • Planning for end of life
      • Bereavement
  • For professionals
    • Professionals
      • Healthcare professionals
        • UK TSC clinical guidelines
        • Personal Child Health Record (Red book)
        • Advice on medicines
      • Social care professionals
      • Education professionals
    • TSC conferences
      • International TSC Research Conference 2021
    • Educational materials
      • TSA professional training courses
      • BMJ learning modules
  • Research
    • How we deliver research
      • Research governance and policies
      • Research strategy
      • Meet your research committee
      • Common questions about our research
    • TSA research
      • TSA-funded research
        • 2022 TANDem seed grant award round
      • TSC Research Volunteer Network
        • TS2000: Tracking TSC throughout life
        • BEE-PP project / BEE study
        • EDiTS study
        • CoIN study
        • The e-SNORE project
        • ACT in TSC trial
      • TSC research from other groups
      • Researchers in focus
    • TSC conferences
      • International TSC Research Conference 2021
        • ITSCRC 2021: Community recap
      • TSC Research Symposium 2020
  • Get involved
    • Our community events
      • Big Day 2025: Our biggest annual event
      • Outlook 2025: For adults mildly affected by TSC
      • TSA Together: Events by the TSC community, for the TSC community
      • TSA virtual and in-person events
    • Donate
      • Donate to the TSA
      • Regular Giving
      • Gift Aid
      • How your donations help
      • Corporate partnerships and giving
        • Give as you earn with payroll giving
        • Meet our corporate supporters
      • Give in remembrance or celebration
      • Leave a legacy
    • Fundraise
      • Fundraise for us
      • Challenge events
      • Fundraising resources
      • Ways to fundraise
      • TSA fundraising campaigns
        • Superhero Summer
        • TSA Dog Jog
        • Room to Breathe – Branching Out for the TSA
        • TSA Lottery
        • TCS London Marathon
      • Fundraising champions
    • Join the conversation
      • Join TSA Voices: Share views quickly and easily
      • Getting to know you: Our ongoing survey
      • Share your story or expertise
      • Community groups and other groups
  • About the TSA
    • Keep updated
      • Sign up to our e-newsletter and monthly magazine
      • News and campaigns
      • Sign up to receive TSA updates
    • About us
      • Mission and vision
      • Meet your team
      • History of the TSA
      • Annual reports
    • Contact us
      • Click here to talk to us
      • Update your information
  • NEWS FLASH: NHSEngland Publishes Urgent Need Policy

NEWS FLASH: NHSEngland Publishes Urgent Need Policy

NHS England has now published the long-awaited urgent and critical need policy. If you or someone you care for has had an individual funding request rejected for access to Everolimus, and their need is urgent, the new policy should be of help to your doctor

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  • NHS England confirms review of Everolimus for TSC

NHS England confirms review of Everolimus for TSC

When Everolimus was licensed for the treatment of TSC, no-one imagined that more than 2 years later we would be campaigning for access in the face of a near total failure in NHS funding in England.   Now, thanks to the many of you who

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  • URGENT – WE NEED YOUR HELP

URGENT – WE NEED YOUR HELP

When Everolimus was licensed for the treatment of TSC more than 2 years ago, no-one imagined that years later we would still be fighting for access in the face of a near total failure in NHS funding in England.    Over the past year and

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  • Everolimus Access Scheme for Wales

Everolimus Access Scheme for Wales

On 17th September, the Welsh Government wrote to NHS Chief Executives across Wales to inform them that an agreement had been reached with Novartis Pharmaceuticals UK Limited for the provision of Everolimus for TSC patients.    This two-year agreement is the first of it’s kind

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  • Download, donate and share the love!

Download, donate and share the love!

Be the coolest person you know by downloading the top new Christmas tune  by Midlands musical maestro MerryM'N  which he has penned on behalf of the TSA. ‘I Want Oatcakes (For My Christmas Dinner)’ can be found on YouTube HERE and while you can download it

Read More
  • Awesome Softcat TSA Money Raising Website

Awesome Softcat TSA Money Raising Website

The awesome people of SoftCat are raising money for the Tuberous Sclerosis Association this Christmas, and will donate £1 for every click they receive to their Christmas site. We could receive up to £5000 – so please click and share. There’s no filling in your

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  • Christmas and New Year Opening Hours

Christmas and New Year Opening Hours

We wish all of our families and individuals a fantastic Christmas break! The TSA will shut down at the end of the working day on the 24th December and reopen on the 4th January. Your Regional Advisor’s voicemail will have all the details of who

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  • Outlook Competition – thank you for your entries

Outlook Competition – thank you for your entries

The deadline to enter our Outlook 20 Art Competition has now passed and we would like to say a massive thank you to everyone who has submitted a piece of art, photography or creative writing. All entries will be proudly displayed at our forthcoming Outlook weekend

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  • The fight for treatment in England goes on

The fight for treatment in England goes on

It's Rare Disease Day on February 29th. Below you can see the official video, or visit their site HERE for more information Please support the fight for treatment in England In November 2014 we launched our Fight4Treatment campaign for access to Everolimus.  At the beginning

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  • EUPATI launches a new educational Toolbox on Medicines Research & Development

EUPATI launches a new educational Toolbox on Medicines Research & Development

The European Patients Academy on Therapeutic Innovation (EUPATI) has launched a toolkit to provide information for anyone who is interested in learning more about the medicines research and development (R&D) process. The press release below describes the context and development of the toolkit. Additionally, you

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Contact Us

The TSA,
Courtenay House,
Pynes Hill,
Exeter,
EX2 5AZ

 

Support enquires:

0808 801 0700
support@tuberous-sclerosis.org

 

Office enquires:

0300 222 5737
Admin@tuberous-sclerosis.org

 

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The Tuberous Sclerosis Association is a company limited by guarantee. Registered in England and Wales no. 2900107.
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