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  • 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
  • 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
  • How we store and use your personal information

How we store and use your personal information

As you may be aware, there are new government regulations coming into place regarding the way companies and charities store and manage individuals personal information, such as your name and contact details. At TSA we welcome these changes. You may have heard about them already

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  • London Marathon 2018 – introducing our #TeamTSA runners

London Marathon 2018 – introducing our #TeamTSA runners

This year we have five amazing people running for us in the Virgin London Marathon 2018 and they are as follows:   Jamie Wareing - Jamie from Preston, works for Preston City Council, and is running for #TeamTSA because his daughter Elsie, 2, has TSC. 

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  • Everolimus for Epilepsy – campaign update

Everolimus for Epilepsy – campaign update

We have submitted feedback to NICE on the draft policy document regarding Everolimus for Epilepsy and the integrated impact assessment. Our CEO Maxine Smeaton has this week received notice that the Scottish Medicines Council is also about to open its consultation, and the TSA will

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  • Blue Badge consultation – have your say

Blue Badge consultation – have your say

  People with hidden disabilities could soon have greater access to blue badges under plans announced by Transport Minister Jesse Norman on 21 January 2018. The proposals, which could see the biggest changes to the system since the blue badge was introduced in 1970, would

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  • #RareDiseaseDay2018 #ShowYourRare

#RareDiseaseDay2018 #ShowYourRare

Wednesday February 28 is Rare Disease Day 2018 and we would like as many people as possible who are affected by TSC to mark this day to help raise awareness of rare diseases amongst the general public and decision-makers about rare diseases and their impact

Read More
  • Treat Me Well – Mencap’s new campaign

Treat Me Well – Mencap’s new campaign

  Have you ever left the GP not quite knowing what they have said to you? Treat Me Well is Mencap's new campaign to transform how the NHS treats people with a learning disability in hospital. The TSA is right behind Mencap's Treat Me Well campaign

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  • Radar Keys – National Key Scheme (NKS)

Radar Keys – National Key Scheme (NKS)

The National Key Scheme (NKS) offers disabled people independent access to locked public toilets around the country. Toilets fitted with NKS locks can be found in shopping centres, pubs, cafes, department stores, bus and train stations and many other locations in most parts of the

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  • A Parent’s Guide to Improving the Well-Being of Young Children with Learning Disabilities

A Parent’s Guide to Improving the Well-Being of Young Children with Learning Disabilities

  A new guide for parents to help improve the well-being of young children with learning disabilities has been published by Professor Richard Hastings, of the University of Warwick. You can read it by clicking HERE. Professor Hastings and his team are keen to hear

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  • Cold weather – are you entitled to a cold weather payment from the Department of Work and Pensions?

Cold weather – are you entitled to a cold weather payment from the Department of Work and Pensions?

With much of the UK affected by snow and freezing temperatures this week if you are on a low income it is possible that you may be entitled to a cold weather payment. You can find out if you qualify for a cold weather payment

Read More
  • NHS England public consultation on funding everolimus for TSC-related epilepsy in England

NHS England public consultation on funding everolimus for TSC-related epilepsy in England

  We are delighted to say that NHS England’s draft policy recommends funding the drug for patients aged two years or older with TSC-related seizures. The exact wording of the draft policy states that: “Everolimus may be given to patients aged two years and older

Read More
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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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