| General | ||
| BD | Batten disease | |
| BDFA | Batten Disease Family Association | |
| BDSRA | Batten disease support and research Association | |
| CNS | Clinical Nurse specialist | |
| EMA | European Medicine Agency | |
| EU | European Union | |
| FDA | Federal Drug Administration | |
| LSD | Lysosomal Storage Disease | |
| MHRA | Medicines & Healthcare products Regulatory Agency | |
| NCL | Neuronal Ceroid Lipofuscinoses | |
| NHS | National Health Service | |
| NICE | National Institute for Health and Care excellence | |
| PO | Patient Organisation | |
| HTA | Human Tissue Authority (UK) | |
| Science | ||
| PPT1 | palmitoyl-protein thioesterase 1 | |
| TPP1 | tripeptidyl peptidase 1 | |
| Medical | ||
| CNS | Central nervous system | |
| EHCP | Education, health and care plans | |
| ERT | Enzyme replacement Therapy | |
| GT | Gene Therapy | |
| HST |
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| ICU | Intensive Care Unit | |
| ICV | intro cerebroventricular | |
| INCL | Infantile Batten disease | |
| IVF |
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| JNCL | Juvenile Batten Disease | |
| LINCL | Late Infantile Batten disease | |
| PGD | pre-implantation genetic diagnosis | |
| SEN | Special educational needs | |
| SRT | Substrate Reduction Therapy | |
| VI | Visual Impairment | |
| vLINCL | Variant late infantile Batten disease |
Donate to the work of the BDFA
With your support we can help support families living with the devastating diagnosis of Batten disease
The BDFA receives NO funding from Government and are only able to carry out our work because of the strong commitment of our volunteers and fundraisers.
Thank you so much for your support
How your donation can help
£5 a month
provides a support and information
folder for a newly diagnosed family
£20 a month
helps to run our family support services
£50 a month
enables us to run training workshops
for professionals to educate them on
Batten disease