Families living in the UK with Tuberous Sclerosis have asked for your help via the Tuberous Sclerosis Association.
These families do not have access to mTOR inhibitor medicines, even though the medicine has been approved for use in the UK for over two years. In Australia the medicine has been funded by the Pharmaceutical Benefits Scheme (PBS) allowing equitable access to the medicine for those who can benefit from this treatment for a subpendymal giant cell astrocytoma (SEGA) or large kidney angiomyolipomas (AMLs). You can read more about mTOR inhibitor medicines here. (link to our page called mTOR inhibitor medicines)
We ask that you watch this video and take a moment to share this story with any contacts you have in the UK. Ask them to get involved in the campaign by writing to their MP in the lead up to the general election.