Bereavement fund
We offer a one-off Bereavement Gift of £1,000 to families within six months of losing a loved one to Dravet Syndrome.
Emotional Support
- One-to-One Family Support
Our Family Support Team is available to listen, talk through your needs, and provide personalised support. We understand the unique challenges of grieving when a loved one has lived with a rare and complex condition like Dravet Syndrome.
- Private Online Community
We warmly invite bereaved families to join the Dravet Syndrome Bereavement Forum, a private Facebook group created specifically for parents who have lost a loved one to Dravet Syndrome. The group is gently led by other bereaved parents who truly understand the depth of this loss and offer a compassionate space for connection, reflection and mutual support.
There’s no expectation to share, many people simply find comfort in reading others’ experiences and knowing they are not alone.
Practical Support
- Bereavement Gift Grant
We offer a one-off Bereavement Gift of £1,000 to families within six months of losing a loved one to Dravet Syndrome. This small, unconditional gift is intended to offer support during an incredibly difficult time.
To be eligible, your loved one must have been registered with Dravet Syndrome UK. The gift is not means-tested, and there is no formal application process.
If you have any questions or would like to talk through your situation, please do not hesitate to contact our Family Support team (details below) for further information.
- Signposting & Guidance
We can signpost you to bereavement services and organisations that offer guidance on emotional, financial or legal matters.
Remembering Your Loved One
Our Remembrance Wall and In Loving Memory stories are a tribute to the lives of those who have sadly been lost too soon due to Dravet Syndrome. These spaces honour and celebrate their memory as part of the Dravet Syndrome UK community.
Both are a tribute to the deep love, courage and connection shared within our community. If you would like your loved one’s name added to the Remembrance Wall, or would like to contribute an In Loving Memory tribute, please email [email protected]
Continued Connection
- Ongoing Inclusion
You are, and always will be, part of the Dravet Syndrome UK community. Our support doesn’t stop after the immediate days or weeks following a loss. We’re here for you, whether it’s months or years later.
You are always welcome at Dravet Syndrome UK events whenever the time feels right for you. You can also access our support at any stage whether you’d like someone to talk to, have questions, or simply want to feel connected.
Grief has no timeline, and neither does our support.
Reach Out to Us
If you’d like to talk, ask a question, or explore support options, please contact our Family Support team:
Call: 01246 912421
In Loving Memory
Remembering the lives of loved ones, lost too soon to Dravet Syndrome. Read their stories as shared by their families.
Debbie’s story
Debbie shares her story of losing her son George to Dravet Syndrome and how she now supports other families.