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Batten Disease Family Association

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

AIMS:

Their mission is to enable everyone who is affected by Batten disease to live life to the full and to secure the care and support they need until they find a cure. The BDFA offers informed guidance and support to families and the professionals who work with them as well as actively increasing awareness of the disease and funding future research to identify potential therapies and ultimately a cure.

 SERVICES PROVIDED:

Here are just a few ways in which the BDFA can provide support:

  • They 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.

  • They can provide leaflets and information which you can give to the professionals working with your child so that they can further understand Batten disease

  • They can provide educational support and training for schools

  • They work with Batten disease specialists and can liaise with them about your situations.

  • They are also able to provide information on research and trials taking place both in the UK and worldwide.

  • They can connect families together to support each other

  • They can connect the professionals working with you with others to share their experience and knowledge.

  • They provide workshops for families and workshops for professionals

  • They can write letters on your behalf to support grant applications or letters to professionals working with your child.

  • They can give guidance on specialist equipment and benefits you may be entitled to.

  • They 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.

CONTACT DETAILS

209-211 City Road
London
EC1V 1JN
United Kingdom

Tel: 07876682589
Helpline: 0800 046 9832
Email: support@bdfa-uk.org.uk
Website: http://www.bdfa-uk.org.uk/about-batten-disease

Record last updated: 23rd Apr 2019

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