Day of Dravet Registration

By |2020-09-15T10:41:22-05:00September 15th, 2020|Categories: DSF Programs|

2020 Day of Dravet Registration is Open Join the DSF Family Network for our 4th Day of Dravet event on Saturday, October 17th. DSF’s 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 [...]

Disaster Relief Grants

By |2020-09-15T10:48:17-05:00September 15th, 2020|Categories: DSF Programs|

DSF Disaster Relief Fund FAMILIES AFFECTED BY NATURAL DISASTERS DSF has long recognized the financial burden our families face and has offered our Patient Assistance Grant (PAG) program since we were first founded in 2009. In addition to this program, we have also established the DSF Disaster Relief and Recovery Fund for patients with [...]

Strategic Plan Update

By |2020-08-17T14:49:20-05:00August 18th, 2020|Categories: DSF Programs|

2019-2020 Progress Report In 2018, Dravet Syndrome Foundation (DSF) developed a 5-year strategic plan to articulate the long‐range direction and priorities for our organization. The content for our strategic plan was derived by examining the Dravet syndrome landscape. We listened to a broad range of input from key stakeholders within our community regarding [...]

Back to School Discussion

By |2020-08-17T14:49:07-05:00August 18th, 2020|Categories: DSF Programs|

Back to School Anxiety in the Dravet Community Join DSF for a session on Back to School Anxiety in the Dravet Community While the pandemic has had a devastating effect for all students, most special ed students have had a particularly difficult time adapting to distance learning. In response to this, DSF is [...]

Parent & Sibling Resource Kits

By |2020-07-15T13:05:06-05:00July 15th, 2020|Categories: DSF Programs|

New Sibling & Parent Resources Many members of our community including parents and siblings (ages 9 and up) participated in a research study called the Sibling Voices Survey. Findings from the study were presented at the 2018 DSF Conference in Aurora, CO. An infographic of the findings can be found here. And now, thanks to [...]

Join Our Virtual Meet-Ups

By |2020-05-14T11:18:07-05:00May 15th, 2020|Categories: DSF Programs|

Virtual Meet-Ups DSF Virtual Meet-Ups are a chance for meeting up face-to-face with one another to chat about what is on our minds and meet new people. The meet-ups are interactive discussions rather than a presentation. They are a great way to spend some time with other Dravet parents from the safety of your own [...]

Patient Assistance Grants

By |2020-05-09T09:47:06-05:00April 17th, 2020|Categories: DSF Programs|

Patient Assistance Grant Program Open DSF has long recognized the financial burden our families face and has offered our Patient Assistance Grant (PAG) program since we were first founded in 2009. While it cannot fulfill all of the financial needs within our community, we hope that it offers a positive avenue to obtain [...]

NEW! Virtual Meet-Ups

By |2020-04-17T08:53:01-05:00April 17th, 2020|Categories: DSF Programs|

Virtual Meet-Ups We held our first Virtual Meet-Ups these past 2 weeks. We thank you for your feedback and we heard you LOUD & CLEAR! The community LOVED meeting up face-to-face with one another to chat about what was on our minds, meet new people and even say hello to some of the [...]

COVID-19 Webinar

By |2020-03-18T12:51:14-05:00March 18th, 2020|Categories: DSF Programs|

Free Webinar: Coronavirus (COVID-19) Resources for DEE Families DEE-P Connections is hosting a special webinar, Protecting Medically Complex and/or Immune-Suppressed Children with Epilepsy from COVID-19 on March 19 from 8-9pm ET. This webinar will be moderated by Heidi Grabenstatter, PhD - Science Director of the International Foundation for CDKL5 Research, and will feature three [...]

Go to Top