Families tell us frequently that the professionals working with their children and young people often do not have access to quality information and resources about all aspects of Batten disease. We hear that health, social care and education professionals turn to the internet for information which can be poor, inaccurate and out of date. To try to solve this issue, the BDFA, with thanks to the kind sponsorship of the Truemark Trust and the Pickering Family, have been able to produce a family folder containing information about all aspects of care for children and young people, and the support and services that are available across the UK.
Free to families – Contact the Family Support Officer to get yours
Available to professionals at a cost of £25
Whats Included?
- NCL Leaflet
- What to tell the children (CLN3 only)
- What to tell the children family story (CLN3 only)
- Epilepsy
- The Ketogenic Diet System
- Movement Disorders in Batten Disease
- Drooling or Hypersalivation
- PEG Feeding
- Sleep
- Puberty
- Constipation
- Dental Care
- Social Services
- Financial Support & Benefits
- Personal Budgets
- Relevant Legislation
- Physiotherapy and Hydrotherapy
- Speech & Language Occupational Therapy
- Transition (CLN3 Only)
- Adults living in a residential placement (CLN3 Only)
- Caring for a young person at home (CLN3 Only)
- NCL disease and Visual Impairment
- NCL and Education
- Education Issues Specific to NCL
- School Placement
- Support from School
- Education, Health and Care (EHC) Assessments
- Behaviour Frustration
- Equipment Leaflet
- Equipment
- Siblings & Grandparents
- Bereavement
- End of Life Care
- Wish Granting
- Fundraising
- NCL Genetics and Diagnosis
- Summary of the New Classification of the NCLs
- Research
- NCL Disease Registries
- Tissue Donation
- Nutrition and Reflux
