The Cardiff TSC Clinic team has submitted an important application to the Welsh Health Specialised Services Committee (WHSCC) to help ensure that the clinic has a strong financial future.

To make sure that WHSCC listens, we need YOUR help!

If you have used the Cardiff TSC Clinic before, we need you to write to your local Member of Senedd (MS) or Member of Parliament (MP) to highlight just how important the Cardiff TSC Clinic has been to you and your family.

Taking part is easy:

  1. Find your local MS or MP
  2. Copy and paste the below template letter, adding the name of your local MS or MP and changing the parts highlighted
  3. Email the letter to your local MS or MP, to make a real difference to the Cardiff TSC Clinic

Share the letter with friends and family and ask them to get involved too

Template email to send to your MS / MP

Dear [Your MS/MP]

Funding for Tuberous Sclerosis Clinic, Institute of Medical Genetics, University Hospital of Wales, Cardiff

I am writing to raise my concern about the future of the Tuberous Sclerosis Clinic at the Institute of Medical Genetics, University Hospital of Wales, Cardiff.

Tuberous Sclerosis Complex (TSC) is a rare, genetic condition that can lead to benign tumours growing in various parts of the body including the brain, eyes, heart, kidney, skin and lungs.

[I/my son / daughter / family member] lives with TSC. The condition has a serious impact on our family and means that [please share your own experience].

The complexity of TSC means that support from a multidisciplinary team of healthcare professionals working together in a clinic setting is key to providing joined-up support for people living with the condition and their families.

The Tuberous Sclerosis Clinic in Cardiff has been a lifeline for me, and for my family. I know that that the doctors running the clinic have submitted a business case to the Welsh Health Specialised Services Committee (WHSSC) seeking funding to secure the long-term future of the clinic. They have not yet secured funding, and I am worried that this service which is vital to my family’s health and wellbeing might not be there when we need it in future.

Please can you raise my concerns with the Health Minister, the Director of WHSCC and any other senior managers at NHS Wales who can influence this decision? My family and others across the country who are living with TSC need reassurance that this vital service for those living with TSC in Wales is safe.

I look forward to hearing from you.

Yours sincerely,

[Your name]

The bigger voice, the harder it is to ignore – your help in highlighting to MSs and MPs the lifeline that the Cardiff TSC Clinic offers could make a huge difference in the success of its funding application.

Make a one off or regular  donation

£10 Means that we can send a support pack to a family who has just received a life-changing TSC diagnosis, ensuring that they do not go through this time alone.

£25 Can help us develop materials that are included in our support services, flagship events or campaigns.

£50 Can provide laboratory equipment for a day’s research into the causes, symptoms, management or treatment of TSC.

To provide help for today and a cure for tomorrow