Patient Family Programs
Helping patients and families is at the heart of DSF. We are dedicated to providing comprehensive support through a variety of programs tailored to meet the needs of patients and their families. Whether it’s access to essential resources, emotional support, or guidance through challenging times, DSF is here to make a meaningful difference.
You must be a member of the DSF Family Network to participate in any of our patient family programs.

Patient Assistance Grants
The DSF Patient Assistance Grant Program offers grants to patients with Dravet syndrome and related SCN1A epilepsies for necessary medical equipment, therapy devices, and educational aids associated with these conditions that are not covered through private insurance or other assistance programs.
This program is open to all patients worldwide who are members of the DSF Family Network.

Birthday Buddies
Celebrate your loved one with Dravet syndrome by enrolling them in our Birthday Buddies program! This special initiative is designed to bring joy and a sense of connection to individuals in our community.
Each year, they will receive a heartfelt birthday card and a thoughtful gift, personally sent by Aurora, DSF’s beloved mascot. It’s our way of celebrating their special day!

Super Siblings
It is challenging when a sibling has a rare epilespy like Dravet syndrome. Routines can be disrupted, and they may experience worry and uncertainty about their sibling’s health. Siblings may feel overlooked or unimportant.
To support siblings, DSF provides a opportunites to connect with others as well as kits designed to help parents and siblings navigate the difficult emotions that can arise when living with a sibling who has a rare form of epilepsy.

C.A.R.E Binder
Planning long-term care for a loved one with Dravet syndrome, can sometimes feel overwhelming. It's natural to experience concern or anxiety as you consider their future needs.
We’ve compiled resources to help you navigate this important task. Remember, while this phase of your family’s rare epilepsy journey may feel isolating at times, you are not alone—we are here to support you every step of the way.

Disaster Relief & Recovery Fund
Our Disaster Relief and Recovery Fund was established for patients with Dravet syndrome that have been impacted by natural and other significant natural disaster events in the U.S., such as fires, tornados, hurricanes, earthquakes.
Families that are members of the DSF Family Network may apply for a $500 Visa card or Amazon E-card to be used for lodging, food, supplies or however needed.

Caregiver Connect Grants
Caregiver Connect Grants are available to partially or fully fund a local Dravet family gathering or an ongoing Dravet support group in your area. For example, you can plan an event for families, a meet-up for moms, or a dinner for dads.
The goal of the grants is to allow our community members to connect and receive support from one another. At this time, Caregiver Connect grants are only available for events within the United States.

DSF Family Network
The DSF Family Network is open to any parent/legal guardian or sibling that is interested in accessing our advocacy services and programs. By joining the family network, community members can stay up to date on new advocacy resources, clinical trials, and educational and fundraising events. As part of the family network, DSF also offers moderated private support groups on Facebook for parents and caregivers of loved ones with Dravet syndrome. We limit membership in these support groups to parents and caregivers who are legally responsible for making medical decisions for the Dravet patient.

Newly Diagnosed Kits
DSF offers a kit for newly diagnosed families that includes a guidebook for families after diagnosis, as well as a medication bag and other materials to assure that families have the knowledge, tools, and resources they need for their child’s care.

Biennial Conference
This 3-day event is unique in that it is designed to unite all groups committed to improving the lives of those with Dravet syndrome – including families, caregivers, clinicians, researchers and professionals in the pharmaceutical industry. There will be speaker presentations on the latest advances in research as well as sessions with up to date information impacting patient care. This event allows the opportunity to foster new relationships and collaborations, both for families and professionals.

Day of Dravet Workshops
Day of Dravet Workshops are a time for patients and their families to come together to learn about research and treatment options, connect with one another, and be a part of a DSF’s shared vision for a better outcome for those affected by Dravet syndrome. They take place on opposite years of our biennial conference. Workshops also feature our VIP Sib Camp and activities for patients.
Learn about topics you have heard about and get accurate information to help you make confident and appropriate decisions on what will be helpful for your loved one’s care. Sessions are presented by community experts – including other parents. This is a chance for patient families to connect with others in their region and have the rare opportunity for community building and connection.