The Batten Disease Family Association (BDFA)
£35,000 pro rata
Fixed term (12 months), Part-time, 14 hours a week worked flexibly
This is an opportunity for you to join a national rare disease charity as our in house scientific ‘expert’ on Batten Disease.
You will join the charity at a pivotal point of its development and this role is core to our purpose as the UK patient organisation for Batten disease. The charity is looking to develop excellent resources on the science of Batten disease, the treatment and research landscape, as well as being able to inform and empower families around the science and ongoing research for the condition. You will lead on this important work, collaborating closely with the CEO.
The BDFA office is in London and the successful candidate will need to travel to London regularly to meet with the wider team. This role will involve travel to build the BDFA’s scientific networks in Europe and beyond.
Qualifications and experience
You will probably have a formal degree level qualification in a relevant scientific discipline, or equivalent expertise
Previous experience in wet lab research or other research background will be helpful
You need to have the ability to explain complex scientific terminology and processes to families
To lead on the creation of excellent resources for families on the science of Batten disease, treatments and how they are developed and research in the pipeline.
To be our science ‘expert’ and be able to speak to families, in groups and individually, at the point of diagnosis and beyond about the disease, treatments and research.
To be able to create and deliver “Batten specific” training for professionals who work with children with Batten disease and families.
To create vital links with other patient organisations globally, and scientists and pharmaceutical companies globally, across the lysosomal storage disorder community to raise the profile of the BDFA and ensure we are always able to communicate the latest, up to date information in the Batten ‘space.
How to apply? Please send your CV and covering letter to Amanda Mortensen at firstname.lastname@example.org
About the BDFA and Batten Disease
The Batten Disease Family Association (BDFA) is the UK’s only patient organisation for Batten Disease. Set up by parents over 20 years ago, the charity supports 114 children, young people and adults with Batten disease as well as advocating for families with the NHSE, NICE and government.
Batten disease or NCLs (Neuronal Ceroid Lipofuscinosis) are a group of severe autosomal recessive inherited diseases characterised by progressive blindness and neurodegeneration, and the accumulation of autofluorescent lipofuscin-like (age pigment) material in the lysosomes of neurons and other cell types. They are the most common childhood onset neurodegenerative disorders and are currently incurable. More than a dozen human disease gene loci have been identified. The function of most of the encoded proteins is unknown.
There is a thriving and collaborative research community with recognised international expertise in the UK and Europe. Work across the world focuses on understanding the basic biology around Batten disease gene function up to therapeutic development and clinical trials.