15 Years of Raising Awareness of Dravet Syndrome

This year commemorates the 15th anniversary of DSF! We eagerly anticipate celebrating the initial 15 years of our impactful journey with you throughout 2024, sharing the highlights of what our community has accomplished through DSF:

  • 15 years of funding groundbreaking research. 
  • 15 years of connecting and supporting families.
  • 15 years of raising awareness of Dravet syndrome.
  • 15 years of collaborative partnerships. 
  • 15 years of impact.

This week we are taking a deeper dive on the third bullet point: 15 years of raising awareness of Dravet syndrome.

Raising awareness about Dravet syndrome has been a key focus of DSF since our inception. We can’t expect significant changes in a rare disease that remains relatively unknown to many, so we recognized the urgency in educating families, clinicians, researchers, biopharmaceutical companies, and the community at large. 

Most importantly, increased awareness of Dravet syndrome can facilitate earlier diagnosis, improve access to appropriate care, and foster connections to a supportive patient community that understands the complexities of this medical journey. Through our efforts to raise awareness, we’ve successfully built a connected and engaged community that was not only prepared to participate in clinical trials, but also understood the significance of sharing the patient experience in drug development and addressing the unmet needs of the patient community.

With greater understanding, there is also the opportunity to encourage policymakers to include rare diseases, such as Dravet syndrome, in national healthcare objectives, ensuring equal access to much needed healthcare and support services. It also helps to encourage research funding and advocate for orphan drug policies which provide incentives for rare disease research.

Help to celebrate our 15 years of progress by making a commitment to join us this June in raising awareness during Dravet Syndrome Awareness Month. Connect with DSF on social media to stay updated and engaged in raising awareness for Dravet syndrome. Share your personal journey and utilize our content to amplify our message. In addition to our social media posts you can expect throughout the month, we have also prepared a series of customizable facts to help you start a conversation around Dravet syndrome on social media. For more ideas on how to raise awareness and key dates during awareness month, visit our website and check out our previous blog post

Together, we can make a difference in the lives of those affected by Dravet syndrome!

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