Batten Disease Professional Development Group (UK)

(Formerly the Batten Disease Interest Group)

For professionals with an interest in Batten Disease

Professional Development Study Days

Professionals from health, education and social services disciplines working with young people and families affected by Batten disease are invited to attend these meetings or to be kept informed of developments by email. More than 60 professionals with a wealth of experience in Batten disease between them are so far involved.

Current objectives are:
To work closely with the BDFA and other parent groups in order to respond to the needs of families and carers
To promote excellence in multidisciplinary and interagency working for children diagnosed with Batten disease
To share knowledge, experience and skills in the management and care of children and families affected by Batten disease
To further the understanding of these conditions amongst professionals
Development of diagnostic and management clinical guidelines
Provide resource materials for professionals
Disseminate information through oral presentations at professional meetings and by publication
To actively participate in clinical Batten Disease Research
To support basic scientific research in Batten Disease

Training opportunities are organised by the Batten Professional Development Group through the support of SeeAbility Heather House Registered Charity No 255913 and the Batten Disease Family Association Registered Charity No 1084908

List of Meetings

Date Time Venue Notes
26 September 2005 Newcomen Centre, Guy's Hospital, London First Meeting
19 January 2006 Guy's Hospital, London Evelina Children's Hospital Bereavement Care Study Day
Contact Ms Mollie Cook, Lead Counsellor Practitioner, Children's Services, Guy's and St. Thomas' Foundation Trust; Tel: 020 7188 4538
24 January 2006 CANCELLED 10.30 - 15.30 SeeAbility Heather House, Tadley, Hants Guest speaker - Dr Rosie Baker, Consultant Psychiatrist, Learning Disabilities.   'Seizure management and the use of anti convulsants in Juvenile Battens'
23 March 2006 10.00 - 12.00 Clinical Tutorial Unit, Moorfields Eye Hospital, London Working group on Family held resource file
8 June 2006 14.00 - 16.30 The Evelina Children's Hospital, Lambeth Palace Road, London

Feedback from 1st International Education Conference on Batten Disease - Quality of Life - Lifelong enrichment May 2006, Orebro, Sweden
Update on provision of Family File and information for families with children with new diagnosis of Batten Disease

23 November 2006 10.30 - 16.30 Clinical Tutorial Centre, Moorfields Eye Hospital, London

Feedback from BDFA Family Support Project
Speaker - Dr Sara Mole 'Update on Batten disease genetic research'
Plans - Training day for professionals and carers
Update - Family File, Cases, BDFA

22 March 2007 10.30 - 16.30 Moorfields Eye Hospital, London

First Annual Training Day

7 June 2007 10.00 - 16.30 University College London

Speaker - 'New experimental therapeutic approaches'

14 November 2007 10.30-16.00 Guy's Hospital, London Batten Disease Training Day
29 November 2007 10.00 - 16.30 Moorfields Eye Hospital, London Cancelled
Speaker - Renee McCulloch 'Palliative care'
18 April 2008 10.30-16.00 Guy's Hospital, London Batten Disease Training Day
5 June 2008 10.30-16.00 Evelina Children's Hospital, London PICU Seminar Room, Forest (Level 2) Palliative care, diagnosis disclosure, case reports
20 November 2008 10.30-16.00 SeeAbility Heather House, Tadley Juvenile Battens
29 April 2010 10.30-16.00 Sherman Education Centre, Guys Hospital, London Livng life with Battens: Caring for a child with juvenile Batten disease
5 May 2011 10.00-16.00 The Royal Foundation of St Katherine, London Livng life with Battens: Caring for a child with infantiel or late infantile Batten disease

Further details and information available from

Dr Ruth E Williams; Evelina Children's Hospital, Lambeth Palace Road, London SE1 7EH; tel: 0207 188 4004
Sarah Kenrick; Registered Manager, SeeAbility - Heather House, Tadley, Hampshire; tel: 01189 817772
Sam Simpson; Family Support Officer, Batten Disease Family Association; tel: 01223 639526