How we can support you.
At the BDFA we think it is important to have a holistic approach and to consider all the needs of a child or young person, their families and the professionals who work with them. We aim to support families from diagnosis right the way through their journey with Batten disease and to ensure that you have access to the right support and information to enable you and your family to have the best quality of life. Please contact us if you feel you need support, either by email: support @bdfa-uk.org.uk or by phone: 0800 046 9832
Here are just a few ways in which the BDFA can provide support:
- We can give advice and support to all members of the family; over the phone, by email or in person at meetings you feel it would be appropriate for us to attend.
- We can provide leaflets and information which you can give to the professionals working with your child so that they can further understand Batten disease
- We can provide educational support and training for schools
- We work with Batten disease specialists and can liaise with them about your situations.
- We are also able to provide information on research and trials taking place both in the UK and worldwide.
- We can connect families together to support each other
- We can connect the professionals working with you with others to share their experience and knowledge.
- We provide workshops for families and workshops for professionals
- We can write letters on your behalf to support grant applications or letters to professionals working with your child.
- We can give guidance on specialist equipment and benefits you may be entitled to.
- We can also provide small grants to families of children or young people who are living or have lived with Batten disease, please contact us to find out more.
