The Batten Disease Family Association believes that no family should go through the devastating journey of Batten Disease alone. We recognise that many Batten’s families can feel isolated in their family experience. The BDFA Family Networking Scheme offers our members the opportunity to make contact with other families, to share ideas, experiences and ultimately to speak to someone else who understands.

Would you like to become a member of our Family Networking Scheme?

Everyone who signs up to become a member of the BDFA will have the option to join the scheme on the membership form.  Current members can also choose to join by completing their membership renewal form or by contacting Matt Hobbs, Family Support Officer, on 01420 556202 or support@bdfa-uk.org.uk.

How does the Family Networking Scheme work?

Once a family has joined the BDFA as a member their name, contact details and brief family information will be included in our Family Networking Directory.  The family will then be sent their own copy of the directory and can then independently choose to make contact with any of the other families on the list.

On-going support and information

The directory will be updated on a regular basis and an email alert will be sent out to the networking group when a new member joins the scheme. At all times the BDFA Family Support Officer, will oversee the scheme and be available to respond to any queries.

Who can join?

Anyone over 18 who is related to a child or young person with Batten Disease. The scheme is not restricted to parents. We welcome grandparents, aunts and uncles and any family member who wishes to make contact with other families experiencing the journey of Batten Disease.

Here is what families think of Family Networking ......

“Our local GP gave us the contact information for the BDFA and suggested that it would be good for us to get in touch and make contact with other families. To be honest this initially terrified us! We were frightened about what we would be told. We took some time to adjust to James' diagnosis and when the time was right for us we contacted the BDFA who put us in touch with other families. We have not looked back since! Talking to other families, usually through email, has been a real comfort. We no longer feel isolated. We are now in regular contact with other families who understand our worries and can help us with the everyday difficulties we find throughout our Battens journey.” Amanda and Ian Harrison

Our whole world exploded when we had our son's diagnosis of Late Infantile Batten Disease. For a few months, we lost our direction in life. Fortunately we made contact with the BDFA, met other families and with the BDFA and the other families support, we learnt to rebuild a new life around Batten's. Each step along the journey has been painful, but that pain significantly reduced by the encompassing support and information people connected with the BDFA has given us, many who have become our friends." Julie Pickering, Mum