As Dravet Syndrome is such a complex condition affecting so many areas of life, we host a Parent/Carer Conference every two years, with the aiming of connecting families and professionals alike and to promote a sense of unity, purpose and knowledge within our community.
Our conference is a great opportunity to meet with other parents/carers living with Dravet Syndrome, who are going through exactly the same experiences. It also offers a unique opportunity to meet and to hear directly from expert guest speakers from the UK around the world. From learning about family rights, to discovering insights about the latest research and treatments; from asking Dravet experts your burning questions to sharing experiences with other Dravet families - our conference provides a friendly environment for furthering knowledge and understanding about living with Dravet Syndrome.
Hearing that we were not alone and learning other people’s journeys not only helped us emotionally, but also by sharing experiences it allowed all the families the chance to get advice from people who were actually going through the same thing. When one parent shares similar experiences and can offer some useful hints or things that work for them, it really is priceless and we left feeling more hopeful for the future.
I love the conference - DSUK is like an extended family, there with open arms saying ‘hey come hang out with us’. That is the sort of thing I want to belong to, where everyone is important & matters & has the chance to build relationships with those in similar situations.