TSA Blog

  • My #RareDiseaseDay trip to Westminster - a day I'll never forget!

    My name is Jane Rogers and #IAMTSC - I have Tuberous Sclerosis Complex. I work part-time as a stroke rehabilitation nurse, and, I have been supporting the TSA for many years. Wed 2nd March was a day I'll never forget!! This was the day me and my husband Philip left our home at 4am to catch a coach to London and the Houses of Parliament for Rare Disease Day Reception 2016. Over the years living with TSC has been draining for me with countless hospital appointments and treatments!! N.. ...more

  • #Fight4Treatment William and Paula's story - Born To Be Different on Rare Disease Day

    MONDAY FEBRUARY 29th is Rare Disease Day and for one mother of a child with Tuberous Sclerosis Complex (TSC) this will be the first time in his life she can mark the occasion knowing her son is getting the drug he needs to keep him alive. William Davis, 16, one of the stars of Channel 4’s ‘Born To Be Different’ series which follows the lives of 6 children growing up in England with a range of disabilities, has TSC – a rare genetic condition. Episo.. ...more

  • #Fight4Treatment letter to Peter Lilley MP on Rare Disease Day 2016

    Dear Peter Lilley MP I would be grateful of you assistance in gaining approval for the drug Everolimus to be made available under the UK rare disease strategy. My son; Leo who is currently 12, was born with the genetic condition Tuberous Sclerosis, a condition that effects 1 in every 6000 live births. The condition has caused him to have Epilepsy, Autism and Learning difficulties due to growths in his brain, kidneys and other areas of his body. In 2014 he was placed on a.. ...more

  • #Fight4Treatment letter to Sajid Javid MP on Rare Disease Day 2016

    Dear Mr Javid, As today is "Rare Disease Day" I thought it would be opportune to write and ask for your support. Thirty eight years ago my daughter Georgina was diagnosed with Tuberous Sclerosis (TSC) at the age of 18 months. She was suffering from delayed development and epileptic seizures. As worried parents we were pleased to be given a diagnosis (which was quite an achievement in those days as we were to discover) but when I asked the consultant - what is the treatment - none and.. ...more