Developing New Therapies for Batten Disease: Patient Involvement

1. University or
Laboratory
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CLN3,
CLN6 &
CLN7
Developing New Therapies for Batten disease: Patient Involvement
Project Coordinator Professor Sara E Mole, UCL
Heather Band, Laura Codd, & Andrea West (BDFA CEO), Batten Disease Family Association, Farnborough, UK
The Batten Disease Family Association (BDFA) is the
national UK charity which aims to support families, raise
awareness and fund and facilitate research into all
forms of Neuronal Cerod Lipofuscinoses (NCL),
commonly known as Batten disease.
Heather Band, BDFA Scientific Officer, leads the work
for the BDFA supported by Laura Codd, BATCure
Administrator.
The BDFA role in BATCure is to ensure that the
Patient voice is heard.
It is a ground breaking initiative for a Patient
Organisation to be directly involved as partner
in a major research project.
The BDFA works closely with Patient
Organisations across the European Union and
worldwide in all aspects of our work within
BATCure to benefit all those affected by Batten
disease.
The survey results will directly inform and
influence the work of the consortium going
forward.
The BDFA provides information and lay
resources.
In the UK, the BDFA organises Laboratory
open days with consortium partners.
This provides an opportunity for families to
meet with researchers and find how the
research is progressing.
Prof Tristan McKay and his lab
What is Batcure?
BATCure is a 3-year research project funded under a European Union call (New Therapies for
Rare Diseases). The goal of the project is to advance the development of new therapeutic
options for patients and their families living with CLN3, CLN6 or CLN7 Batten disease.
Who is involved ?
A consortium from seven European countries made up of ten leading scientific research
groups, three companies and the Batten Disease Family Association (BDFA) who is leading
part of the project and ensuring that the voice of patients and affected families is heard.
This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 666918
BATCure
@BAT_Cure
www.batcure.eu
BDFA Project Contact
Laura Codd
BATCure Administrator – BDFA
lauracodd@bdfa-uk.org.uk
www.bdfa-uk.org.uk