General: 07876 682589    |   Fundraising: 07876 682589   |   Support: 0800 046 9832  
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
Highly Specialised Technology
ICU Intensive Care Unit
ICV intro cerebroventricular
INCL Infantile Batten disease
IVF
In-vitro fertilisation
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

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To make a donation to the BDFA please click the button below which will take you Paypal.

 

All donations help us to provide the best support we can to families affected by Batten Disease.

 

Thank you for your support.