July 27 , 2022

Dear Friends,

Your voice matters to us. We want the Dravet syndrome patient community to be heard in order to educate others.

Back on February 3, 2022, we brought your voice to a virtual Externally-Led Patient-Focused Drug Development meeting on Dravet syndrome. During the meeting, we were able to educate representatives of the Food and Drug Administration (FDA) and pharmaceutical companies, as well as academic researchers and clinicians, about the challenges that individuals living with Dravet syndrome face daily.

Thank you to the patient panelists, phone callers, and individuals who bravely chose to share their experiences to support this effort. With this input, we documented the significant physical and emotional impact on people living with Dravet syndrome and our hope for future treatments.

View our Voice of the Patient Report to hear from our patient community and learn more about this meeting.


Dravet Syndrome Foundation


Newly Diagnosed? We Are Here For You.

We understand that receiving a diagnosis of Dravet syndrome can be overwhelming, and it may leave you with many unanswered questions. Our Newly Diagnosed Resources Page is here to provide you with a place to start understanding more about what a diagnosis means by providing you with information you can trust. We encourage you to approach the diagnosis with anticipatory optimism and remember that our DSF community is always here to support you!


Watch Our Recap

While the 5th biennial DSF Family & Professional Conference may be over, you can still catch all of the great information and fun we had! Recorded sessions are now available on our website for on-demand viewing for our entire community. Learn more.

Cycle For a Cure

Get in your exercise and give back to the Dravet community with Cycle for a Cure! During the months of July and August, you can commit to the "Century Ride" and track your miles to help us cycle towards a cure for Dravet syndrome. Learn more.


Get Your Merch

Our new logo design is here, and we are so excited to be sharing our new look with the community. If you're loving our new design as much as we are, you can show your support and rock the new look with us by purchasing merchandise. Learn more.


News and Events

DSF moderates private support groups for parents and caregivers of loved ones with Dravet syndrome.
These are great resources for families to ask questions and find support. 
Learn more

DSF is proud to be a GuideStar Platinum Nonprofit Profile participant.
Platinum lets us show quantitative metrics on the progress we’re making toward our mission!
Learn more


Dravet Syndrome Foundation
PO Box 3026  | Cherry Hill, New Jersey 08034
203-392-1955 | info@dravetfoundation.org

Having trouble viewing this email? View it in your web browser

Unsubscribe or Manage Your Preferences