The Department of Health today published the UK Rare Diseases Strategy and has pledged to speed up the diagnosis of rare dieseases, and improve access to the medicines to treat them. Interestingly, the government also announced today that it would be investing £20m over four

All medicines have expected benefits and known risks.  The Tuberous Sclerosis Alliance in the USA has published a paper to help parents weigh up the risks and benefits when considering treatment with vigabatrin for infantile spasms or epilepsy.    The TS Alliance’s publication examines the

The TSA are delighted to announce new members of staff joining the TSA, and bringing with them a wealth of experience that can only help us to better support the TSC community. Here’s a run down of the new faces of the TSA.   HEADS

Rare Disease UK (http://www.raredisease.org.uk/) is using Rare Disease Day to raise political awareness and to ask politicians to support the UK Strategy for Rare Diseases. RD-UK has produced a set of template letters for you to adapt. There is room in the letter to inform

Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and RD-UK at the UK level.  The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’

As an organisation made up entirely of home-based staff the TSA has, for a number of years, relied on various and changing PO Boxes for donations and other post.  We have found that our reliance on PO Boxes can cause significant problems, for example when

TSA partners with BMJ - Learning to educate professionals about TSC.  Timely diagnosis and treatment of any complications are key to ensuring the best possible outcomes for people with TSC.  Not all healthcare professionals learn enough about TSC when they are training to enable them

The Association of British Pharmaceutical Industries (ABPI) has commissioned a survey to find out about patient and carer views and experiences in relation to accessing medicines (in the case of TSC, accessing Everolimus). The findings of the survey will be used to raise the profile

Failure of the NHS to fund access to medicines to treat rare conditions such as Tuberous Sclerosis is a major ongoing issue.   Today the Genetic Alliance UK have launched a landmark Patient Charter that highlights the concerns patients have about the new approach the

The National Institute for Health and Care Excellence (NICE) is seeking members for a guideline development group that will be tasked to produce a social care guideline on transition from children’s to adults’ services.  NICE will be recruiting four people with experience of using services,