Amanda’s Epilepsy Journey
Diagnosis and year of diagnosis I was diagnosed with epilepsy in 2000, and I have been living with epilepsy for more than 26 years. My journey has included countless seizures,…
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Amanda’s Epilepsy Journey
Jon’s Epilepsy-Caregiver Story
Editor's Note: Patient Worthy is honored to share the following caregiver story, submitted to us by Jon Scheinman of The Epilepsy Foundation. To see the article in its original format,…
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Jon’s Epilepsy-Caregiver Story
FDA Extends Review of Praxis Epilepsy Drug Candidate Relutrigine by Three Months
As reported on BioSpace, Praxis Precision Medicines has received a three-month extension to the U.S. Food and Drug Administration’s review of relutrigine, its investigational therapy for rare genetic forms of…
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FDA Extends Review of Praxis Epilepsy Drug Candidate Relutrigine by Three Months
Choosing Joy: Erika’s Journey of Raising a Child with Dravet Syndrome, a Rare Form of Epilepsy
In the whirlwind of early motherhood, days blur together in a haze of feedings, diaper changes, and sleepless nights. You’re learning your baby’s every sound, every expression, and trying to…
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Choosing Joy: Erika’s Journey of Raising a Child with Dravet Syndrome, a Rare Form of Epilepsy
Real-World Evidence Sheds Light on SYMPAZAN® Oral Film Use for Lennox-Gastaut Syndrome
Assertio Holdings has announced the results of the first real-world evidence study evaluating patient experience with SYMPAZAN® (clobazam) oral film, presented at the 150th Annual Meeting of the American Neurological…
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Real-World Evidence Sheds Light on SYMPAZAN® Oral Film Use for Lennox-Gastaut Syndrome
Hyderabad Doctor Sheds Light on Rare Fainting Disorder Affecting South Indian Children
A recent article from The Economic Times spotlights the intriguing case of a young boy from South India who repeatedly fainted during baths—a perplexing pattern that led to the identification…
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Hyderabad Doctor Sheds Light on Rare Fainting Disorder Affecting South Indian Children
Meredith’s Superhero Story
Meredith’s Medical Journey Meredith Grace was born full term. During the first few hours of her life, she seemed extremely uncomfortable and would only be content in my arms. After…
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Meredith’s Superhero Story
Tiffany Kairos on living with 2 chronic illnesses
Living with a chronic condition is never easy, but living with two can feel like an insurmountable challenge. My journey with epilepsy and endometriosis has been a test of resilience,…
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Tiffany Kairos on living with 2 chronic illnesses
source: Dravet Foundation Spain
The Dravet Syndrome Foundation Calls for More Research and Social Awareness on World Epilepsy Day
Contributed by Dravet Foundation Spain The group values the progress made but urges the continued implementation of the effectiveness of the drugs Epilepsy unexpectedly and suddenly marks the onset of…
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The Dravet Syndrome Foundation Calls for More Research and Social Awareness on World Epilepsy Day
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Rare Community Profiles: Breaking Barriers: How Nicole and Emma Offer Hope Amidst a Dravet Syndrome Diagnosis
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…
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Rare Community Profiles: Breaking Barriers: How Nicole and Emma Offer Hope Amidst a Dravet Syndrome Diagnosis
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Presymptomatic Sturge-Weber Syndrome Treatment Reduced Seizures for Young Girl
Quinnlyn Walters is a bright, bubbly, and active 8-year-old. She loves reading, riding horses, swimming and softball, karate, Star Wars, and spending time outside with her friends and family. But…
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Presymptomatic Sturge-Weber Syndrome Treatment Reduced Seizures for Young Girl
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Researchers Identify Potential CDKL5 Treatment Target
As it stands today, there are no cures for CDKL5 deficiency disorder. Treatment is symptomatic and supportive, and includes physical, occupational, and speech therapy. CDKL5 deficiency disorder causes seizures,…
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Researchers Identify Potential CDKL5 Treatment Target
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VNS Therapy Reduces Seizures for Teen with Aicardi Syndrome
When Brittany Miller welcomed her daughter Brooke into the world, she had no idea what the next few months would bring. At just a few weeks old, Brooke began having…
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VNS Therapy Reduces Seizures for Teen with Aicardi Syndrome
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Rare Community Profiles: Mahnaz Asgharnejad Discusses Data on Soticlestat for LGS and Dravet Syndrome
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
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Rare Community Profiles: Mahnaz Asgharnejad Discusses Data on Soticlestat for LGS and Dravet Syndrome
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June is Dravet Syndrome Awareness Month!
Did you know that June is considered Dravet Syndrome Awareness Month? Every year, people within the Dravet syndrome community come together to amplify stories, raise awareness, and encourage the general…
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June is Dravet Syndrome Awareness Month!
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FDA Grants Orphan Drug Designation to Ganaxolone for Lennox-Gastaut Syndrome
Prior to the end of March 2023, ganaxolone had received six separate Orphan Drug designations from the FDA; more recently, as shared in a news release from commercial-stage pharmaceutical…
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FDA Grants Orphan Drug Designation to Ganaxolone for Lennox-Gastaut Syndrome
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Real-World Data Shows that Epidiolex Significantly Reduces Seizure Frequency in LGS and Dravet Syndrome
Seizures associated with conditions such as Dravet syndrome and Lennox-Gastaut syndrome (LGS) can be difficult to treat; these seizures may be treatment-averse and may not respond well to current anti-epileptic…
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Real-World Data Shows that Epidiolex Significantly Reduces Seizure Frequency in LGS and Dravet Syndrome
Photo courtesy of Erika Vandenberg
A Mother’s Desire to Raise SLC6A1 Awareness: Erika and Aubrey’s Story (Pt. 1)
When Erika Vandenberg learned that her daughter Aubrey had a rare genetic disorder called SLC6A1, her first two reactions were fear and relief. Relief because they finally had a name…
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A Mother’s Desire to Raise SLC6A1 Awareness: Erika and Aubrey’s Story (Pt. 1)
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Woman Shares her Experience with FIRES and Recovery
At 20 years old, Grace Hinchman was - for all intents and purposes - a happy and healthy young adult. Grace was studying Business at Loyola University Chicago and playing…
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Woman Shares her Experience with FIRES and Recovery
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Boy with Lennox-Gastaut Syndrome Struggles to Get Life-Saving Medicinal Cannabis
According to a recent article, the parents of a boy with epilepsy were told they would need to prepare for him to have end-of-life care after they were unable…
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Boy with Lennox-Gastaut Syndrome Struggles to Get Life-Saving Medicinal Cannabis
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Epilepsy Research UK Joins Tuberous Sclerosis Association in Funding Collaboration
According to a recent announcement, Epilepsy Research UK has announced a funding collaboration with the Tuberous Sclerosis Association which will support the investigation of tuberous sclerosis complex (TSC)-associated epilepsy.…
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Epilepsy Research UK Joins Tuberous Sclerosis Association in Funding Collaboration
Join in On Celebrating Dravet Syndrome Awareness Month!
During this month, the Dravet Syndrome Foundation (DSF) organizes a variety of activities and resources to help raise awareness for Dravet syndrome, a rare form of epilepsy. They make it…
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Join in On Celebrating Dravet Syndrome Awareness Month!
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FDA Approves ZTALMY for CDKL5 Deficiency Disorder
Until recently, patients with cyclin-dependent kinase-like 5 (CDKL5) deficiency disorder (CDD) did not have an FDA-approved treatment option. This all changed when the regulatory agency granted approval to ZTALMY, also…
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FDA Approves ZTALMY for CDKL5 Deficiency Disorder
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Ketamine Earns Orphan Drug Designation for Status Epilepticus
In the United States, Orphan Drug designation is granted to drugs or biologics intended to treat, prevent, or diagnose rare diseases or conditions. A “rare” condition is one affecting under…
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Ketamine Earns Orphan Drug Designation for Status Epilepticus
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TANGO Gene Therapy Could Treat Dravet Syndrome
What do medication, vagus nerve stimulation, and low-carb ketogenic diets all have in common? Currently, these are all therapeutic options for those with Dravet syndrome. However, researchers and doctors believe…
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TANGO Gene Therapy Could Treat Dravet Syndrome
