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We need YOUR help in the fight to get access to TSC medicines

We’re working flat out for the TSC community to have access to new medicines

The TSA does everything that we can to make sure that decision-makers come to the right decision in TSC treatment and therapy access. But, we can only do this with YOUR help.

This page outlines all of our current and ongoing campaigns, so that you can help us to ensure that the TSC community gets the treatment and therapy access that they deserve.

The clock is ticking, and we need you.

Epidyolex® (cannabidiol) for TSC-related epilepsy

Epidyolex® (cannabidiol) was recently approved by UK regulator the Medicines Healthcare Products Regulatory Agency (MHRA) for TSC-related epilepsy. But, this is just the first step to the TSC community getting access to this important medicine option.

If we’re going to be successful, we need you to help us demonstrate to decision-makers why access to Epidyolex® is so vital.

We have already shared the views of people living with TSC and their families with Welsh decision-makers. Now, we need to tell Scottish decision-makers about experiences of taking Epidyolex®. 

If you or a loved one have already been taking Epidyolex®, please contact the TSA
(research@tuberous-sclerosis.org / 0300 222 5737) by Monday 18 October – we will then speak to you before submitting our application to Scotland decision-makers by 1 November 2021.

Your input is welcome no matter where you live in the UK, and this is the only way to submit your views and experiences as part of the Scotland submission.

We can campaign only thanks to donations

We have already worked hard with decision-makers to get Epidyolex® this far, but there’s still a lot of campaigning to do for this medicine and other TSC treatment options that are on the horizon. We can continue to campaign and fight for the TSC community only if we receive donations.

Please consider making a one-off donation or a regular donation to the TSA of £5 a month.

“I feel empowered that we can offer our support to the TSA through jointly campaigning with them for the rights of people affected by TSC. I am hugely thankful and grateful for the work of the TSA and the very special people who are part of this journey.”

TSC Community Member

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If you are interested in sharing your experience or if you have any questions, please get in touch through either email (research@tuberous-sclerosis.org) or telephone (0300 222 5737)

To provide help for today and a cure for tomorrow