NCL RESOURCE - A GATEWAY FOR BATTEN DISEASE
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
| 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 |
|
| 23 November 2006 | 10.30 - 16.30 | Clinical Tutorial Centre, Moorfields Eye Hospital, London | Feedback from BDFA Family Support Project
|
|
| 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 | Guidelines |
|
| 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 |
'NCL Resource' is maintained by Sara Mole.
MRC Laboratory for Molecular Cell Biology, University College London, Gower Street, London. WC1E 6BT. United Kingdom.
If you have comments or suggestions or details for inclusion, email ncl-www@ucl.ac.uk or telephone +44 207 679 7257.
Last updated 23/1/2013