SAVE THE DATE!
DSF Biennial Family & Professional Conference
June 25-27, 2026
Click on a link below to navigate directly to the answers you need:
- Event Overview
- 2025 Champion Challenge
- Program at a Glance
- Conference Sessions
- Patient Activity Room
- Sibling Camp
- Wings of Hope
- Registration Information
- Hotel Information
- Travel Scholarships
- Other Funding Opportunities
- Planning Your Budget to Attend
- FAQs
- Additional Information for Clinicians, Researchers, and Industry
Event Overview
We’re excited to announce the 2026 DSF Biennial Family & Professional Conference will take place in beautiful Orlando, Florida, at the Renaissance Orlando at SeaWorld. This event brings our community together in a way that no other can. We are deeply grateful to our sponsors for making this life-changing experience possible.
Our biennial conference brings together families affected by Dravet syndrome, healthcare providers, researchers, and industry partners to foster collaboration, education, and advocacy. The goal is to accelerate research, improve care, and strengthen support for those impacted by the condition. The conference provides a platform to raise awareness, share the latest scientific and clinical advancements, promote equitable access to resources and treatments, and empower the patient community through connection and knowledge-sharing. Over the course of three transformative days, you’ll have the opportunity to connect with fellow families, engage with researchers and clinicians, and gain hope from the latest breakthroughs in care. With a mix of scientific sessions and social events, the conference offers something valuable for everyone!
You can look forward to:
- Educational sessions covering all facets of Dravet syndrome, including treatment, research, clinical trials, and day-to-day care
- A patient activity room designed with comfort and fun in mind
- Sibling camp to keep brothers and sisters engaged and supported
- Evening socials and dinners to foster new friendships and celebrate our journey
Questions? Email us at info@dravetfoundation.org
2025 Champion Challenge
Host a DSF Steps Toward a Cure event in 2025, and your fundraising efforts can unlock rewards for the 2026 DSF Family and Professional Conference, including registration and hotel accommodations. Learn more at this link.
Program at a Glance
Thursday, June 25: Clinical Trial Updates, Welcome Sessions, Community Dinner
Friday, June 26: Science and Research Sessions, Community Dinner
Saturday, June 27: Wings of Hope, Family Sessions, Workshop, Community Dinner
Conference Sessions
Conference sessions have been designed to address both the medical and emotional dimensions of living with Dravet syndrome. By focusing on key areas such as cutting-edge research, clinical care advancements, and the impact on families, sessions aim to empower attendees with practical tools and resources. Additionally, healthcare professionals will gain valuable insights into the latest treatments, care strategies, and best practices, helping to enhance patient care and foster stronger connections within the Dravet syndrome community.
A preliminary agenda will be available in January 2026.
Patient Activity Room
Our Patient Activity Room, hosted by Ciara’s Light Foundation, will offer a variety of engaging activities on both Friday and Saturday, specifically tailored to the unique needs of our patients. These sessions are designed to provide a supportive and fun environment for individuals affected by Dravet syndrome. Please note that patients must be accompanied by a parent or designated caregiver to participate, ensuring that everyone receives the attention and care they need while enjoying the activities.
Sibling Camp
Our Sibling Camp is packed with exciting activities both on and off-site, designed to create meaningful connections and provide support for siblings of individuals with Dravet syndrome. Through interactive sessions and adventures, siblings will have the opportunity to bond, share experiences, and develop a deeper understanding of their unique roles within the family. Whether it’s making new friends, engaging in fun activities, or simply enjoying time together, the camp provides a space where siblings can feel supported, understood, and celebrated.
Wings of Hope
At every conference, we hold our Wings of Hope butterfly release to honor the memory of those we’ve lost and celebrate the strength of those living with Dravet syndrome. This heartfelt ceremony serves as a symbol of resilience, love, and the enduring spirit of our community. Each butterfly released represents not only a life remembered but also the ongoing journey of those continuing to fight each day. It’s a poignant moment of reflection, hope, and unity that brings us all closer together in our shared mission.
For those unable to attend, there is still the opportunity to sponsor a butterfly in honor of their loved one and we will share a livestream of the release on Facebook. More details will be available in January 2026.
Travel Scholarships
We are actively working to secure funding for conference travel scholarships and will provide updates as soon as the application details become available. Stay tuned for information on how to apply and take advantage of this opportunity to help your family attend the conference.
Other Funding Opportunities
Financial assistance may be available through local community networks and agencies. Many community organizations offer support to families with children who have disabilities, recognizing the value of conferences like this one in providing connection and education.
To find the right organization to assist you, start by searching online, reaching out to friends and neighbors, and asking within your community. We are also in the process of compiling a comprehensive list of resources to serve as a starting point for your search for potential funding sources. This will help guide you in finding the support you need to attend the conference. Stay tuned for more details!
Planning Your Budget to Attend
Plan your budget for attending the conference with ease using our helpful budget sheet. This tool will guide you through estimating your expenses, from registration fees to travel, accommodation, meals, and any additional costs, ensuring that you’re fully prepared for the event. The sheet will also help you track potential funding sources, like scholarships or sponsorships, so you can plan accordingly. With everything in one place, you can manage your finances efficiently and focus on making the most of your conference experience. Stay organized and stress-free as you plan your trip!
Additional Information for Clinicians, Researchers, and Industry
Sessions on Thursday and Friday are geared to be useful to both professionals and families. Session topics on Saturday are focused issues important to families, but may still hold great value for professionals to understand more about the lived experience.
Registration Costs
Adult Family Member Ticket: $250
Sibling (4-17): $75
Sibling (3 and under): FREE
Patient with Dravet syndrome (any age): FREE
Healthcare Professional or Industry Partner: $350
Virtual Registration: $75
Conference registration will open up in January 2026.
Hotel Information
FAQs
Why should I attend?
Our biennial conference brings together all stakeholders committed to improving the lives of individuals affected by Dravet syndrome – including patient families, clinicians, researchers, and professionals from the biopharmaceutical industry. This unique gathering fosters collaboration, connection, and knowledge-sharing across the entire Dravet community.
Conference Overview
📍 Location:
Renaissance Orlando at Seaworld
🗓️ Thursday – Opening Day
The conference kicks off with important industry updates, followed by a comprehensive overview of Dravet syndrome. A special session will be held for first-time attendees to help them navigate the event and make the most of their experience.
🗓️ Friday – Clinical & Research Focus
Friday features a full day of programming centered on clinical care and research advancements. Topics will include the latest in diagnosis, treatment options, and ongoing clinical trials. Presentations will be led by leading clinicians and researchers in the field. The day concludes with a dinner reception and brief program, offering time to relax, connect, and reflect on the day’s insights.
🗓️ Saturday – Living with Dravet Syndrome
Saturday’s sessions focus on the daily realities of living with Dravet syndrome, offering guidance, resources, and shared experiences. The day begins with our 4th Wings of Hope butterfly release—a moving ceremony to honor those we’ve lost and celebrate the hope we carry forward. In the afternoon, an interactive workshop will provide attendees with the opportunity to explore genetic therapies and important considerations surrounding them. Led by leading experts in the field and featuring insights from families with lived experience, this session will offer a well-rounded perspective on the promise, challenges, and real-world implications of emerging genetic treatments for Dravet syndrome. We will close the day with another dinner reception and short program, where we will proudly present the Ciara’s Spirit of Hope Award, recognizing strength, resilience, and advocacy within our community.
This three-day event is more than just a conference – it’s an opportunity to learn, grow, and unite as we work together toward a brighter future for those living with Dravet syndrome.
How often and where is the conference held?
DSF hosts its Family & Professional Conference in-person every two years. The location changes from region to region across the U.S.
Is there a virtual attendance option?
We are pleased to offer a virtual attendance option for those unable to travel to Florida. Virtual attendees will have live access to all conference sessions, as well as on-demand access to session recordings through December 31, 2026.
Tickets are $75 and can be purchased by clicking the Registration button on the conference website. This is a great way to stay informed and engaged from wherever you are.
Is on site registration available?
Onsite registration IS NOT available. All attendees must register for the conference by the deadline.
Can patients or siblings attend sessions?
To ensure all attendees can fully engage with the valuable content being presented and to maintain high-quality recordings by the A/V team, we strongly recommend that siblings participate in our Sib Camp and patients are invited to our patient activity room, accompanied by an adult caregiver. This is to ensure that all session attendees can fully engage and learn without distractions, and as a courtesy to our speakers.
If you do choose to bring patients or siblings to sessions, please be mindful of others. If any disruptions occur, we kindly ask that you take immediate action and leave the session as a courtesy to fellow participants. In such cases, you may be asked to exit the event. We appreciate your understanding and cooperation.
Patients with Dravet syndrome and their siblings are welcome to have breakfast and lunch with their families, and of course are invited to join us for the evening social events, where families can connect, relax, and enjoy quality time together in a supportive and inclusive setting.
Are there activities for patients?
We do offer a dedicated Patient Activity Room, hosted by Ciara’s Light Foundation, designed to meet the needs of our community. This activity room offers two full days of engaging and age-appropriate activities, while also allowing the flexibility for campers to come and go as needed. Please note that all patients must be accompanied by a caregiver at all times while in the activity room.
Are there activities for siblings?
We are excited to offer our VIP Super Sibs Camp once again on Friday and Saturday, with a meet and greet on Thursday. To attend, children must be at least 4 years old and fully potty-trained. Siblings aged 16 and older are welcome to volunteer as team leaders for the camp. The camp schedule aligns with the conference sessions each day.
Is financial support available to attend?
DSF is working on securing funding for a limited number of travel scholarships for the conference. When available, information on this program and other suggestions for financial assistance can be found on this page, under Travel Scholarships.
Can I cancel my registration?
Cancellation requests must be submitted in writing to info@dravetfoundation.org. Requests received on or before June 4th are eligible for a refund, minus a $50 administrative fee.
Cancellation requests made after June 4th are nonrefundable, except in cases of family emergencies. These requests must be submitted via email to info@dravetfoundation.org.
Please note that no-shows will not be eligible for a refund.
If you cancel and are eligible for a refund, you can expect to receive it within 30 days. All refunds will be processed to the original payment method.
2024 Conference Session Recordings
View our 2024 Conference Sessions: