Families Family support

DSUK Assistance Fund 16+

DSUK assistance fund 16+

When Dravet Syndrome UK registered as a charity back in 2009 we were not aware of any adults living with Dravet syndrome within the United Kingdom. As time has moved on we are now delighted that we have a significant number of adults on our membership list.

More and more adults are being tested and given the correct diagnosis, which is wonderful. One thing that has been apparent, however, is the lack of support that is available when these patients transition into adult services.

For this reason Dravet Syndrome UK have set up the DSUK Assistance Fund 16+. This fund is for those families whose children are aged 16 and over and families can apply to us for anything that will improve the lives of their Dravet adult. For guidance on the types of things we will fund please see our application form. The limit on each application is a maximum of £1,000 per family per 12 month period, but we will look at each individual case to assess the needs and whether or not they are being met elsewhere.

As with all our assistance programmes we will not be means testing but we will require a letter of diagnosis as proof of the condition. DSUK Assistance Fund 16+ is a rolling programme and applications will be accepted and reviewed at any time. New applications can be made annually, however new families and first time applicants will take priority, so subsequent applications may incur waiting time.

Apply online for the DSUK Assistance Fund 16+


Guidelines for applications

  1. This is a rolling programme so applications can be made at any time
  2. We accept applications for any diagnosed patients from 16 years upwards
  3. Up to £1000 for one item or one project may be applied although we will look at each application on an individual basis
  4. Your application will be acknowledged once it is received and we should be able to let you know the result of your application within a maximum of 4 weeks after the quarterly Trustees meeting
  5. Families can only apply once within a 12 month period
  6. Any items, equipment or assistance that will improve the life of the Dravet adult will be considered
  7. We will not fund holidays but may consider contributing towards the cost of a holiday if it can be shown to benefit the applicant
  8. We may wish to publicise the grant so would ask for your cooperation with this
  9. Wherever possible Dravet Syndrome UK will order the items direct from your chosen supplier and arrange delivery to your home
  10. A letter giving proof of diagnosis must be attached to the application
  11. Examples of items/equipment/assistance funded:
    • iPad
    • Special clothing
    • Funding towards wheelchairs
    • Sensory equipment
    • Toys
    • Garden equipment