Upcoming EL-PFDD Meeting February 3rd!


Upcoming EL-PFDD Meeting February 3rd!

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So far admin has created 52 blog entries.


By |2021-06-15T15:52:27-05:00June 3rd, 2021|Categories: 2021 Virtual Tote Group 2|

Biocodex is a family-owned multinational pharmaceutical company founded in France in 1953, with proven expertise in treatments for the central nervous system. We are dedicated to providing education and support in the field of Dravet syndrome to healthcare providers, affected individuals, and their families. Navigating Life with Dravet Syndrome

Meet Brian

By |2021-06-02T07:53:05-05:00June 2nd, 2021|Categories: Dravet Stories|

About Brian I am the mother of 28 year-old Brian. We live in Knoxville, TN. I was a college French professor at Carson-Newman University, until I had to quit in 2000 because of Brian's seizures and me being an hour away. My husband Tom was a research physicist at Oak Ridge National Lab. His research [...]


By |2021-06-14T19:08:51-05:00June 1st, 2021|Categories: 2021 Virtual Tote Group 2|

Epygenix Therapeutics is a clinical stage precision medicine-based biopharmaceutical company developing drugs for rare and intractable forms of genetic epilepsy, such as Dravet syndrome and Lennox-Gastaut syndrome. Journey from Aquarium-to-Bedside to Treat Genetic Epilepsies The ARGUS (EPX-100; Clemizole HCI) trial is currently recruiting. More information on this multi-national, multi-center trial may be found on clinicaltrials.gov. [...]


By |2021-06-15T15:08:53-05:00June 1st, 2021|Categories: 2021 Virtual Tote Group 2|

At UCB, we come together every day laser-focused on a simple question: How will this create value for people living with severe diseases? We are a global biopharmaceutical company committed to innovation to improve the lives of people with neurological and immunological diseases, finding solutions to meet their unique needs. Seizure Diary Infographic on Seizure [...]

Stoke Therapeutics

By |2021-06-16T07:57:12-05:00June 1st, 2021|Categories: 2021 Virtual Tote Group 2|

Stoke Therapeutics is a biotechnology company dedicated to addressing the underlying cause of severe diseases by up-regulating protein expression with RNA-based medicines. Using the Company’s proprietary TANGO (Targeted Augmentation of Nuclear Gene Output) approach Stoke is developing antisense oligonucleotides (ASOs) to selectively restore protein levels. The Company’s first compound, STK-001, is in clinical testing for [...]


By |2021-06-23T13:10:47-05:00June 1st, 2021|Categories: 2021 Virtual Tote|

Zogenix, is a growing global pharmaceutical company passionate about taking on the complex challenges of developing therapies with the potential to transform the lives of rare disease patients and their families. Visit us at Zogenix.com to learn about Zogenix and a treatment for Dravet syndrome. Photo Diaries:  The Facebook photo diary hosted by Zogenix is now live.  [...]

Greenwich Biosciences

By |2021-06-21T11:38:04-05:00June 1st, 2021|Categories: 2021 Virtual Tote|

The Greenwich Biosciences mission is rooted in unlocking the potential of cannabinoid medicines to address serious medical conditions with limited treatment options. Greenwich Biosciences, now a part of Jazz Pharmaceuticals, is the U.S. leader in the field of cannabinoid prescription medicines. Caregiver Brochure  

Meet Andie

By |2021-05-17T17:23:47-05:00May 17th, 2021|Categories: Dravet Stories|

About Andie Our family moved to Houston, Texas to get better medical care when we found out our sweet Andie was diagnosed with Dravet Syndrome. We have a great familial support system here and feel so blessed to be surrounded with so much family. Our family loves everything outdoors. We love discovering new places together [...]

Meet Kiyonori

By |2021-05-17T17:35:31-05:00May 17th, 2021|Categories: Dravet Stories|

About Kiyonori My second son has Dravet syndrome. He is 27 years old. We live in Japan. A local nonprofit, Pokkapoka Runners, matches participant runners with disabled individuals. Participants deepen their interactions with disabled people through training sessions, practice sessions, etc. Thanks to this activity, my second son is able to run. When did Kiyonori's [...]

Meet Royall

By |2021-05-17T17:36:21-05:00May 17th, 2021|Categories: Dravet Stories|

About Royall Hi my name is Ericka I am 26 years old and was blessed with my precious Royall on August 18. My son was diagnosed with Dravet syndrome in December, it has been a rough road expecially when you have no knowledge of it, but I am a women of strong faith and I [...]


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