Recognizing that it was often difficult and/or too expensive for families to travel to DSF’s family & professional biennial conference, we wanted to offer another educational opportunity that would be easier for our community to access. In 2017, as an offshoot of the DSF Family Network, DSF hosted our first series of regional Day of Dravet workshops across the U.S.
Day of Dravet workshops are held each fall and offer the chance for you to learn about the latest in the field of Dravet syndrome (DS), as well as the current initiatives that DSF is undertaking. This is also a time for you to participate in conversations with other community stakeholders – including leadership from DSF, industry members, clinicians, and researchers.
Day of Dravet sessions differ from our conference sessions in that they are not recorded or part of a Continuing Medical Education Program for professionals. Because of this, families are welcome to bring their Dravet child to any of the sessions at Day of Dravet. There is also a DS activity room at each event, where your child may participate in fun activities with a caregiver that you provide.
Along with sessions for caregivers, we invite siblings to participate in our one-of-a-kind Super Siblings Camp. Siblings will have fun participating in various activities, talking about the good and not-so-good parts of having a sib with special needs, and having the opportunity to meet and connect with other sibs. This is an opportunity for sibs to have a day about them that is dedicated to fun, laughs, and connections.
DSF was built by and for the Dravet community. I encourage you to be a part of a workshop near you and lend your voice to important conversations that impact your loved one and your family.
Why your family should attend:
- To hear timely topics for caregivers of patients with DS
- For a chance to connect and share information with other region-based families
- To participate in mutually beneficial dialogues between community stakeholders, including industry members and DSF Leadership
- To share your perspective on caregiver concerns and needed tools to help manage care
- To learn about DSF and our programs and how you can get involved
- For the opportunity for siblings to participate in Super Siblings Camp