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TSC research volunteer network

Have a voice in the research that the Tuberous Sclerosis Association funds, regardless of your background or experience

Are you affected by Tuberous Sclerosis Complex (TSC)? Join the TSC research volunteer network to have an important voice in influencing research that the Tuberous Sclerosis Association (TSA) prioritises and funds.

You don’t have to have TSC yourself to join the research volunteer network – family members, loved ones and carers of people directly impacted with TSC are also very welcome and important to the network.

Share your interest in joining the TSC research volunteer network by filling in the form below.

The TSC research volunteer network helps to prioritise and highlight important TSC research by:

  • Telling researchers about their personal experiences of TSC
  • Identifying important research questions that the TSA should be trying to answer
  • Suggesting ideas for new research projects
  • Reviewing funding applications for research that the TSA has received
  • Reviewing community-friendly summaries of research applications, and projects that are currently funded
  • Talking at TSC research events about how TSC affects you on a daily basis and how research might help to improve your quality of life

What is the TSC research volunteer network?

The TSC research volunteer network encourages more conversations between researchers and the TSC community – this is called ‘Patient and Public Involvement (PPI). There is growing evidence suggesting that involving people who are directly affected by a condition in research can have a positive impact on those living the condition, researchers and clinicians.

By involving more people from the TSC community in our research priorities, the TSA can be sure that it is focusing research on what matters most to the TSC community.

Joining the TSC research volunteer network does not mean being an active participant in clinical trials or answering only surveys.

Are you a researcher looking to involve the TSC community in your work? Click here to tell us about your research.

Sign up to the TSC research volunteer network

Why is patient and public involvement important?

Patient and public involvement (PPI) ensures that community members are at the heart of research, actively involving the community in research that is carried out – rather than research being undertaken ‘for’ or ‘about’ the community, research is undertaken ‘with’ or ‘by’ the community.

Patient and public involvement in research is now seen by many funders as an essential part of the process of how research is identified, prioritised, designed, conducted and disseminated.

Many funders will now accept applications only if they clearly show how the researcher has and will involve the patient community at every stage of their research. However, patient and public involvement is most definitely not a ‘tick-box exercise’.

If you’d like to know more about the TSC research volunteer network, contact the TSA research team: research@tuberous-sclerosis.org / 0300 222 5737.

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.