The TSA supports Rare Disease UK’s #RareReality campaign Luke Langlands2019-02-15T00:00:00+00:00 Share this post FacebookTwitterRedditLinkedInWhatsAppEmail Related Posts Getting started with Disability Living Allowance (DLA) Tips for a TSC-friendly Easter Proposed reforms to Personal Independence Payment (PIP) England Rare Diseases Action Plan 2025: What are the new priorities? Spring 2024 budget: Important updates for the TSC community New research shows link between seizure impact and brain development ‘Room to Breathe’ garden in aid of the TSA at RHS Chelsea Flower Show Decision-makers in England agree to fund Fintepla for TSC-related condition Lennox-Gastaut Syndrome Scotland approves funding medicine for TSC-related condition, Lennox-Gastaut Syndrome Scotland says ‘Yes’ to Hyftor for facial angiofibromas! 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Head of Fundraising New report on ways to reduce TSC diagnosis times TSA Support Line Appeal: We need your support TSC and mental health: Rae’s story 60 seconds with… TSC researcher Kate Fifield Managing behaviours that can be considered challenging Participants needed for important TSC-related epilepsy clinical trial Hyftor receives UK marketing authorisation 60 seconds with… TSC researcher Liezl Schlebusch Global TSC Awareness Day x Mental Health Awareness Week: Rebecca’s story New TSC research co-funded by the TSA revealed Covid-19: Children aged 6 months – four years old to be offered spring vaccine £80,000 award to fund Challenging behaviour and Autistic Spectrum Disorder in Tuberous Sclerosis British 10K London Run Challenging Behaviour information Challenging behaviour: a guide for family carers on getting the right support Everolimus granted European Licence for renal AML EXCLUSIVE 2-4-1 BIG FUN RUN ENTRY Facts about TSC: Holiday Information Guide 2013 Insurance information Merseyside Support Group: 2013 meeting dates Results of Exist-2 Study Sending Cheques to the TSA Sibs:New UK wide online service Tuberous Sclerosis Association Survey 2012 UK clinical trial results published Votubia (Everolimus) Fact Sheet Votubia Launched in UK Write Away to cure TSC Yorkshire 3 Peak Challenge 22nd June 2013 Channel 4’s Born to be Different Series Tuberous Sclerosis Association Grant Round 2013 What would you like to see in a Centre of Excellence? The TSA Statement on Reshaping the Research Function Wales Gene Park to appear on S4C’s Corff Cymru Epilim and Pregnancy Working with the Medicines Industry The TSA is looking for a new Head of Research Open Letter to Alex Neil MSP Jean Wilson – Back on Board! Membership Survey Results 2013 URGENT NOTICE – TSA PO Box VACANCIES New NICE Guidance on the Management of Autism New Guidelines Released for Diagnosis, Surveillance and Management of TSC Rare Disease Strategy launched for the UK Vigabatrin – TS Alliance publishes new paper News starters for 2014 Rare Disease Day 2014 – Please help raise political awareness. Rare Diseases Day with the TSA, 28th February Important Announcement: A New Address for the TSA BMJ Learning module launched! Invitation to take part in access to medicines survey. Patient Groups Unite on Access to Medicines Guideline Development Group Members Wanted Critical appraisal training Huge Thanks to our London Marathon 2014 Team TSA! A Tea and Scones Blog Party! Write to your MP – Access to Everolimus for TSC Win a Luxury Tea Hamper TSA Consultation Response for Welsh Implementation Plan for Rare Diseases Volunteers’ Week 1st-7th June Fair Access to Medicines in Wales Ann Hunt, MBE Design our TSA Christmas Card! Are you facing difficulties in accessing treatment? Free information – Special Educational Needs and Disability (SEND) reforms Health Minister attends Northern Ireland Rare Disease seminar Petition on access to medicines in Wales referred on for Review. New Award to Support Career of Young Scientists Your help urgently needed to secure NHS services and treatment for TSC Annual Conference 2014 resources: Access to medicine in England – We urgently need your help! URGENT – YOUR HELP NEEDED NHS England drug delay led to ‘absolutely preventable’ deaths Open letter to NHS England Board from UK Clinicans NHS England to Publish Policy on Urgent and Critical Need Access MPs support call for Access to Medicine – Ministers Urged to Intervene Exclusive: NHS England labelled ‘dysfunctional’ over drug policy delay Greg Mulholland MP secures parliamentary debate NEWS FLASH: Ministers Asked to Intervene… NEWS FLASH: NHSEngland Publishes Urgent Need Policy NHS England confirms review of Everolimus for TSC URGENT – WE NEED YOUR HELP Everolimus Access Scheme for Wales Download, donate and share the love! Awesome Softcat TSA Money Raising Website Christmas and New Year Opening Hours Outlook Competition – thank you for your entries The fight for treatment in England goes on EUPATI launches a new educational Toolbox on Medicines Research & Development TS Care Treatment – Are you receiving it? TSA Big Day 2016 #Fight4Treatment, the time to act is now #Fight4Treatment consultation underway now – have your say Two speakers announced for Birmingham Regional Group Are you ready for TSC Awareness Week 2016? Latest Janet Medcalf award helps ease the pain of Storm Frank Record numbers booked for this year’s Outlook Weekend New booklet explains the risks of taking valproate during pregnancy Good luck to all our London Marathon runners Everolimus proven effective in the treatment of Epilepsy. A massive thank you to our fab @LondonMarathon runners – you’ve raised more than £11,000! Watch our new Tea & SCones for TSC 2016 video on YouTube David Cropper – Hardmoors 110 for Sam Volunteers needed for Genetic Alliance UK ‘hidden costs’ study TRON study to open centre in Glasgow Everolimus prescribing policy (England) Newsflash – Great North Run places still available!! Calling All Budding Artists: Christmas Card Competition 2016 NHS England devastating U-turn on drug treatment for brain tumours The Times publishes NHS consultants’ #Fight4Treatment protest letter Ava wins 2016 Christmas card design comp #Fight4Treatment makes The Daily Express Biggest field yet set to do iconic Great North Run for us Watch presentation from belfast TAND conference 2019 #Fight4Treatment – on BBC Radio York #Fight4Treatment update – Mail on Sunday article #Fight4Treatment - Julian Sturdy MP Leads Cross Party Group of MPs Lobbying NHS England Over Much-Needed Everolimus Drug Christmas and New Year opening hours EUPATI Toolkit Individual Funding Requests (IFRs) survey NHS England Agrees to Fund Everolimus for SEGA TSABigDay 2017 workshop topics Volunteers needed to review our factsheets IT switchover – emails affected Rare Disease Day 2017 TSA celebrates 40th anniversary in 2017 Volunteering Update 2017 TSA Big Day and Outlook weekend 2017 – save the dates Everolimus granted European Licence for refractory epilepsy in adults and children with TSC London Marathon 2017 – introducing #TeamTSA Jayne Spink, CEO, leaves to take the lead at Genetic Alliance UK TSA signs SHCA letter to Prime Minister re: rationing of treatment White Stuff volunteers join #TeamTSA Rare Disease Day 2017 ‘We’ve come a long way – but there’s more to do’ How TS research is changing cancer treatment Bears4Rare campaign for fair and fast access to treatment for rare disease patients London Marathon 2017 – one month to go! Carers Assessments – help in Scotland New booklet for young people with autism in Scotland Rare Disease Day 2017 at the Scottish Parliament Survey on disability and housing TSA Ambassador Marie James attends Senedd for Rare Disease Day 2017 Campaign call to write to your MP to challenge unfair access to medicine and care for people with Rare Diseases – ahead of a Westminster debate. Government announces plans to implement the UK strategy for rare disease with NHS England The Tuberous Sclerosis Association announces new CEO, Louise Fish Media Release – Louise Fish to join TSA as new Chief Executive Officer London Marathon 2017 – 10 days to go! Good luck #TeamTSA at today’s #LondonMarathon London Marathon #TeamTSA raise more than £18,000!! London Marathon 2018 – ballot opens today for five days Young, with a disability, and seeking work – complete this survey by 1 May Volunteers Week 1 – 7 June – send us your selfies please Election 2017 – Pledge for Patients Research Priorities for Learning Difficulties in Children and Young People in Scotland Bristol Regional Group Farm Day success Hello from new CEO Louise Fish Association of Medical Research Charities (AMRC) #charityimpact campaign Dr Chris Kingwood wins prestigious 2017 Manuel R. Gomez Award Professor Julian Sampson is awarded 2017 Manuel R. Gomez Award Everolimus and TSC related epilepsy – urgent request for your experiences Christmas Card 2017 Choices Everolimus and epilepsy – thank you for your tremendous response TRON study – final few weeks of recruitment European Patients’ Academy for Therapeutic Innovation (EUPATI) free workshops Survey about life with TSC and partial refractory seizures Good luck to all our Great North Run 2017 runners! 1-2-1 sessions available with Dr Chris Kingswood at #TSABigDay Creche update – TSA Big Day 2017 #TSABigDay creche now full Volunteers needed for tomorrow’s focus group in London 1-2-1 sessions now available with Dr Sam Amin at #TSABigDay 1-2-1 sessions now available with SEN expert Wendy Cliff at #TSABigDay One week left to have your say on our 5-year draft strategy 2017-2022 Could a Family Fund grant help you and your family? Charity Film Awards 2017 – vote TSA today Survey into TSC – £25 on completion We need you Wanted – Rare Disease Day 2018 campaign stars! Introducing the TSA’s Interim CEO Maxine Smeaton Festive message from the TSA Ask Listen Do Survey – please respond by 31 January TSA 2018 – normal opening hours resumed Very sad news of TAND researcher Loren Leclezio Tea & SCones for TSC 2018 – what will you do? How we store and use your personal information London Marathon 2018 – introducing our #TeamTSA runners Everolimus for Epilepsy – campaign update Blue Badge consultation – have your say #RareDiseaseDay2018 #ShowYourRare Treat Me Well – Mencap’s new campaign Radar Keys – National Key Scheme (NKS) A Parent’s Guide to Improving the Well-Being of Young Children with Learning Disabilities Cold weather – are you entitled to a cold weather payment from the Department of Work and Pensions? NHS England public consultation on funding everolimus for TSC-related epilepsy in England TSC research pioneer Ann Hunt now in Oxford Dictionary of National Biography Budding rock stars with TSC wanted! Draft Autism (Wales) Bill – have your say Epilepsy Action Family Camp – apply before Monday April 16 Would you like to go to TS Alliance conference in Dallas this July? Everolimus approved to treat partial-onset seizures in patients with TSC in America London Marathon 2018 #TeamTSA heroes Contact survey into family finances – please respond TSA Research Committee – call for new lay member TSC Global Awareness Day – Tuesday, 15 May TS Global Awareness Day Announcing your new #TeamTSA fundraising contacts Positive results in topical rapamycin trial A Double-blind, Randomized, Placebo-controlled Study to Investigate the Efficacy and Safety of Cannabidiol (GWP42003-P, CBD) as Add-on Therapy in Patients with Tuberous Sclerosis Complex Who Experience Inadequately-controlled Seizures NCT02544763 Landmark decision as everolimus for refractory epilepsy in people with Tuberous Sclerosis Complex is accepted for use by NHS Scotland How does NHS England’s Clinical Priorities Advisory Group (CPAG) work? Recent media coverage regarding cannabis and epilepsy £5m investment into CAMHS Scotland welcomed by TSA NHS England ignores evidence on everolimus for TSC-related epilepsy and says it will not fund treatment that changes lives #everolimusforepilepsy #NHSwrongdecision #wewontgiveup Campaign Update Message to our TS community members in England who are currently on everolimus trials A response to the UK Government announcement today that medicinal cannabis products are to be legalised within the UK TSA to host the International TSC Research Conference in 2020! Ready…Steady…Write! Everolimus to become affordable for Australians with TSC-related epilepsy Child care information update for #TSABigDay 2018 Hotels information for TSA Big Day 2018 TSC-association neuropsychiatric disorders: findings from the TOSCA natural history study TSA Big Day 2018 – outline agenda for the day #everolimusforepilepsy campaign update – October 2 Formal Notice of the TSA’s Annual General Meeting 2018 – Saturday 10 November Siblings group for brothers and sisters of children with TSC – CANCELLED #Oliverscampaign to be debated in Parliament TSA Big Day 2018 – rail travel disruption affecting East Midlands Rail One-to-one sessions with clinicians at the TSA Big Day: information and how to book TSA Big Day – rail travel disruption affecting Northern Rail TSA Big Day 2018 – full agenda for the day TSA Big Day – siblings group cancelled First UK clinical guidelines for Tuberous Sclerosis Complex will drive higher quality and more consistent care from the NHS #everolimusforepilepsy campaign update – November 30 2018 Data from phase III US clinical trial of Epidiolex® (cannabidiol oral solution) in TSC expected in 2019 TSA 2018 Christmas and New Year opening hours NHS England announce that everolimus is to be funded for TSC-related refractory epilepsy from April 2019 NHS England publishes its Long Term Plan TSC community mourn the loss of Professor Sue Povey Belfast patient conference – Understanding TSC-Associated Neuropsychiatric Disorders (TAND) Save the date: Outlook 2019 to take place Saturday 18 May in Bristol Goodbye and thank you Sue London Marathon 2019 – introducing #TeamTSA Watch presentations from Belfast TAND conference 2019 The TSA share their support for Rare Disease Day 2019 Professor Sue Povey Memorial Symposium, Friday 12 July The TSA supports Rare Disease UK’s Rare Reality campaign Vacancies at the TSA Louise Fish: Why Rare Disease Day is so important Tributes to Stephen Dale TSA auction: x2 tickets for The Price (London West End) plus aftershow drinks with David Suchet TSA website survey: we want to hear from you! Outlook 2019 tickets now available TSA publishes summary of the UK’s first clinical guidelines on TSC TSC research project update and researcher interview: Development of a LAM model Landmark global TAND research project awarded funding Take part in research: Genes and the kidneys in TSC 2019 Prudential RideLondon-Surrey 100 – introducing #TeamTSA! Save the Date: Big Day 2019 confirmed for 2 November in Nottingham Louise Fish: Why sharing your TSC stories on Global TSC Awareness Day 2019 and at any time of the year is so important Save the date: Family Fun Day 2019 taking place 27 July at Chester Zoo Tea and SCones for TSC 2019 round-up ‘An evening with David Suchet CBE’ black-tie fundraising event tickets now on sale TSA Scottish Get Together – free tickets now on sale! Sleep and behaviour studies: TSC research at the University of Birmingham Save the Date: Welsh Info Day 2019 confirmed for Saturday 28 September in Cardiff Welsh Info Day 2019: Free tickets now on-sale! 2019 Great North Run – introducing #TeamTSA! TSA publishes ‘easy read’ summary of first UK TSC clinical guidelines Big Day 2019 – Everything you need to know Big Day 2019: Register for clinician one-to-ones Vacancy at the TSA: Support Line Adviser New TSA website: we want your feedback! Big Day 2019: Event guide Update: when will cannabis-based medicines be available on the NHS for TSC-related epilepsy? TSA funded research: EDiTS study receives funding to extend research Big Day 2019: Slides and presentations now available Survey and focus groups to get views on upcoming TSA support line Recent TSA-funded research findings published in Science Vacancy: Fundraising Manager – Trusts and Foundations (part-time) TSA Christmas 2019 opening times TSA says a fond farewell to Tanya Darnton Dates for 2020 TSA events confirmed First Outlook 2020 sessions confirmed! TSA support line pilot to begin Monday 10 February Rare Disease Day 2020: Celebrating the TSC community Coronavirus and TSC: Information for the TSC community Positive wellbeing and calm during self-isolation Questions about shielding Coronavirus and TSC: How the TSA has adapted to covid-19 A chat with Paula Davis about Born to be Different (Channel 4) Watch sessions from the Outlook Virtual Meeting 2020 Coronavirus and TSC: Child education TSA Support Line feedback: Make your voice heard TSA virtual meetings roundup Creative community: Bella Forshall Write to your MS/MP for the Cardiff TSC Clinic TSC research spotlight: Dr Charlotte Tye Remembering Olive Lindsell TSA update: “Rebuilding and adapting to protect our future” TSA update: “New faces and new responsibilities for the TSA team” Q&A with Dr Shelagh Joss (Glasgow NHS TSC Clinic) TSC and flu jabs Coronavirus and TSC: Keep safe and in-touch with residential care Coronavirus and TSC: Updated England guidance for extremely vulnerable Coronavirus and TSC: Updated measures in Scotland TSC Research Update event: Now available online Coronavirus and TSC: Vaccine priority groups Now available: Sir David Suchet ‘Night Before Christmas’ reading UK travel to EU still covered by state-level care Coronavirus and TSC: Vaccines information Positive results in vigabatrin trial to prevent infant seizures Study suggests metformin improves epilepsy and reduces SEGA size Watch ‘In Conversation with Sir David Suchet CBE’ today Positive CHMP opinion for Epidyolex® in TSC-associated epilepsy Run for the TSA at the Virtual London Marathon 2021 International TSC Research Conference 2021 early bird booking open Coronavirus Emergency Appeal: Covid-19 has hit our funds, and we need your help Under-16s and covid-19 vaccines: Common questions European Commission approves Epidyolex® (cannabidiol) for TSC-associated epilepsy Your help needed to get everolimus approved in Wales Long-term funding secured for Cardiff TSC Clinic Take part in TSC caregiver survey Updated covid-19 info on under-16s and covid-19 vaccines #ITSCRC2021: Recap Festive greeting card competition 2021 International guidance on TSC care updated Support article: Your first steps after a recent TSC diagnosis ITSCRC2021: Community recap page now live Carer self-care: Looking after yourself, as well as others Ganaxolone shows positive phase 2 results in TSC-related epilespy Back to school checklist We need YOUR help in the fight to get access to TSC medicines YOUR input needed in new important facial angiofibroma survey Covid-19 third and booster jabs: What you need to know YOUR voice is needed to help us achieve access to Epidyolex® Festive greetings card design 2021 – Competition winner confirmed! TSA Annual General Meeting 2021 Sir David Suchet CBE performance to be dedicated to the TSC community TSA Annual General Meeting 2021: Recording now available TSA says a fond farewell to Kathryn The Big Give is LIVE – double-value donations for one week only New phase of EDiTS study now open to preschool participants Welsh decision-makers approve funding of cannabidiol (Epidyolex®) for TSC-related refractory epilepsy, allowing access to the medicine in Wales Those at higher risk of serious covid-19 effects to access covid home treatment Participants needed: New TSC study building meaningful lives for young people Scottish Medicines Consortium approves cannabidiol (Epidyolex®) for TSC-related refractory epilepsy, meaning medicine will be available in Scotland International Day of Women and Girls in Science Scan March 2022 out now – including TSCensus Measuring the impact of TSA-funded research Results from the Stay Calm Project The TSC Clinics Virtual Challenge is GO! We’re recruiting! Fundraising Lead New TSA Joint Chief Executives confirmed The researchers awarded funding in the TSA’s first-ever TAND-focused grant round London Marathon 2023: TSA applications now closed England decision-makers say ‘No’ to Epidyolex: Let’s change their mind! Remembering Tom Carter Supporting children’s mental health #ChildrensMentalHealthWeek TSC sleep project seeks volunteers Updated info on TSC and genetics Planning for a restful festive season Welcome to Jan Burns, Head of Fundraising! We’re recruiting! Fundraising Officer England decision-maker says Yes to Epidyolex for TSC-related epilepsy! Welcome to the TSA team Amy! We’re recruiting! Research and Partnerships Officer We’re recruiting! Trustee / Treasurer
