Volunteer Researcher Post

Alex TLC are looking for a Volunteer Researcher to join the team…

Alex, The Leukodystrophy Charity (Alex TLC) are a small, independent charity supporting individuals and families affected by a rare disease called Leukodystrophy. We send out monthly Research Summaries to the individuals we support, our beneficiaries, with a summary of recent Leukodystrophy research papers. These summaries allow beneficiaries to read about recent studies and clinical trials, in a format that is relevant and understandable to them.

Could you spare a few hours a week to help us?


We are looking for a volunteer to:

  • read leukodystrophy research papers, selecting relevant information to summarise
  • complete own research and reading to understand background of a study or clinical trial
  • summarise key points and conclusions of research papers in a coherent manner
  • write information in an understandable format for beneficiaries, focusing on what information they would want to know and using a suitable level of terminology

This is a wonderful opportunity to develop your existing skills within a unique arena, learn about the difficulties facing those with rare disease, and give vital and tangible support to sufferers of leukodystrophy.


Candidates should be able to demonstrate the following:

  • an interest in Alex TLC and the work that we do
  • an understanding of the complexities of leukodystrophy



  • a degree in biomedical/biological sciences (essential)
  • PhD or Masters in a Biomedical Science (desirable)



  • excellent computer skills, particularly Microsoft Word and Excel
  • excellent organisational and administrative skills
  • ability to read around a subject area; accuracy, the ability to read large amounts of text and extract the useful information and sensitivity, the ability to summarise information succinctly
  • experience writing research summaries for lay audiences (desirable)
  • post-graduate experience in biological science (desirable)



  • knowledge about genetics, the genetic basis of disease and gene therapy (essential)
  • understanding of the process of getting pharmaceuticals to market (desirable)


Alex TLC are flexible and the role can be home based or at our Peckham, London SE15 office.

Please contact suzanne@alextlc.org if you want to find out further information, have any questions or are interested in applying for the role with us.

Alex - The Leukodystrophy Charity