|
The Batten Disease Family Association (BDFA)
was formed in 1998 by a small group of parents of
children with Batten Disease with the help of seeAbility
and Contact-a-Family. Registered Charity status for our
national support network was granted in 2001. In 2003
we received grant funding from the Jeans for Genes
Campaign to carry out research projects into patient
support and clinical assessment to inform our support
provision. In 2006 we employed a part-time Charity
Development Officer and restructured our Board of
Trustees to support our essential work and ambitious
plans for the future.
The BDFA is committed to:
-
Preserve and
protect the health and promote the welfare of
persons affected by all types of Neuronal Ceroid
Lipofuscinosis (NCL) commonly known as Batten
Disease
-
To advance the
education of professionals, carers and the general
public on the subject of Batten Disease and its
implications for the family
-
To promote research
into the management of Batten disease and to publish
the useful results thereof and to support
organisations promoting research into Batten disease
What do we
do and what research do we support?
Read more
about our ethos in our new Mission Statement.
Join Us
Become a family or professional member of the BDFA as
one step in the Batten’s Journey.
As well
as being able to support you as best we can, the more
members we have, the wider and stronger our network and
the louder our voice to raise awareness, seek funding
and facilitate research in the hope that one day soon a
cure will be found.
Click here for a membership form.
|
