June is Dravet Syndrome (DS) Awareness Month—a time to recognize and celebrate the resilience of those living with and caring for someone with DS. It is also a focused time to raise awareness for this rare, complex, and lifelong developmental and epileptic encephalopathy (DEE) that begins in infancy.¹ 
 

More than just severe seizures, DS is also associated with a range of comorbidities, including intellectual disabilities, autism², ADHD2, behavioral challenges, and difficulties with speech, mobility, feeding, and sleep.¹ The impact on daily life is profound, but so is UCB's commitment to the DS community to work in partnership to build a better future.
 

As part of our commitment to the DS community, we offer a range of resources and initiatives designed to improve the daily lives of families affected by DS. Through education and advocacy, we strive to reduce stigma, foster connection, and ensure that no one facing DS feels alone. For over five years, UCB has supported communities living with DEEs like DS—reaching more than 10,000 patients globally—and we remain dedicated to providing meaningful support to the DS and broader epilepsy communities every day.
 

VIP Sibling 
When parents keep siblings informed about DS, it can significantly support their emotional well-being and help them better understand the condition. VIP Sibling.com is a valuable resource designed to help siblings of individuals with DS navigate challenging situations. It encourages healthy communication, providing siblings with strategies for coping with and expressing their feelings. Available in English and Spanish, VIPsibling.com offers downloadable resource kits for caregivers and age-appropriate kits for the siblings to support the entire family. Studies show that up to 76% of siblings who felt knowledgeable or had helped during a seizure reported less depression and/or anxiety mood symptoms.³ Having that foundation of knowledge allows siblings to cope. In fact, up to 86% of those who were informed about their sibling's condition reported feeling more comfortable talking about it with other people.³ Providing age-appropriate information about their sibling can give comfort and build confidence as they learn to navigate challenging situations.

C.A.R.E. Binder
Planning the transition from pediatric to adult care for a loved one with a rare epilepsy or developmental and epileptic encephalopathy (DEE) can feel overwhelming. It is a complex, confusing, and often emotional process. It's also the first important step to plan for as you consider the long-term adult C.A.R.E. Plan for your loved one, but you don't have to navigate it alone. The C.A.R.E. (Caring for Adults with Rare Epilepsy) Binder is a supportive planning tool, available as an interactive PDF, that is designed to help families organize and prepare for the future. While it doesn't replace legal, financial, or medical advice, it offers helpful guidance as you prepare for changes in medical care, housing, long-term support, and more. For adult siblings or others in your circle of support, we're pleased to announce the addition of the C.A.R.E. Binder Sibling Companion Guide. Developed in collaboration with adult siblings, this guide contains insights and practical tips to support adult siblings or others with supportive or primary caregiving tasks.
 

From managing the transition out of pediatric and into adult care systems (typically between ages 18–22) to preparing for long-term caregiving needs, the C.A.R.E. Binder and the C.A.R.E. Binder Sibling Companion Guide walk families through essential steps, including crisis planning and future caregiver transitions. And importantly, a Respite & Self-Care section is included, ensuring the caregiver has the information they need to help prioritize self-care, understand the signs and symptoms of caregiver burnout, and learn how and when to ask for help. Patient organizations like the Dravet Syndrome Foundation, Lennox-Gastaut Syndrome (LGS) Foundation, TSC Alliance, and others offer a lifeline to families in their communities and other valuable resources. This resource encourages caregivers to ask for help, assuring them they are not alone.
 

CareCompassTM
Caring for someone with DS or Lennox-Gastaut syndrome (LGS) is a journey filled with love—but also with complexity, uncertainty, and constant responsibility. From tracking medications to managing medical devices, coordinating care teams, and navigating everyday routines, caregivers often carry a heavy, invisible load. CareCompass is our response to these challenges.
 

Built in close collaboration with caregivers and grounded in real-life experiences, CareCompass brings clarity and peace of mind to those caring for a loved one with DS or LGS. It allows families to centralize important care information—such as medications, seizure action plans, emergency contacts, and equipment—into one secure, easy-to-use space. Caregivers can also create and share personalized care guides, manage daily routines, and document their and their loved ones emotional as well as physical well-being.
 

Grounded in a deep understanding of the unique challenges faced by caregivers of individuals with DS and LGS, CareCompass was meticulously developed and validated through literature reviews, social listening, and direct engagement with caregivers, such as interviews and a 4-week pilot, ensuring the solution will effectively address real-world needs.
CareCompass is now available, free of charge, to families of a loved one living with DS or LGS in the US via any internet-connected device. To the caregivers who show up, day in and day out—your strength doesn't go unnoticed. If you are interested in trying out CareCompass, you can sign up for free by clicking here. 
 

Awareness in Action
Raising global awareness of rare epilepsies like DS goes beyond designated awareness days or months. It's a core part of our everyday mission. We believe amplifying patient and family voices is essential to building understanding, reducing stigma, and driving meaningful change. Sharing personal stories and lived experiences fosters empathy and helps others navigate similar journeys.
 

That's why we continue to support transformative resources and initiatives like UCB's Raring to Listen podcast. These resources play a vital role in how we engage with and support our communities, offering both practical guidance and emotional connection. In the latest episode of Raring to Listen, Austin Watson from the Dravet Syndrome Foundation shares how prioritizing self-care helped her avoid burnout and become a more substantial support for her family. The episode also features 8.5 year-old Dylan, who opens up about growing up with a sibling diagnosed with Dravet syndrome. She speaks openly about the challenges she's faced, how she supports her brother, and the tools she's developed to protect her own mental health and well-being.
 

Taking Small Steps for Big Impact
Get your bug spray packed and your campfire songs ready because Camp Small Steps is finally here! In partnership with the Dravet Syndrome Foundation (DSF), and as a community-building extension of Shine Forward with Dravet, we're bringing the joy and adventure of the camp experience to the DS community during this year's Day of Dravet events. Designed to provide a safe, inclusive, and accessible environment where families can come together, Camp Small Steps underscores connections and the celebration of milestones, no matter how small they may seem. 
 

Born from the insight that LGS and DS families are often excluded from cherished childhood milestones and activities but still have a strong desire to engage in outdoor activities and sensory stimulation, Camp Small Steps was created to help safely give loved ones these experiences. But Camp Small Steps isn't just for individuals living with Dravet syndrome, it's for the entire family. Caregivers, siblings, and extended family members all come together with their loved ones with Dravet to experience a unique camp experience—many for the very first time.
 

Together, these stories underscore the power of community, resilience, and awareness and reflect our ongoing commitment to making a difference for individuals and families impacted by rare epilepsy syndromes.
 

To learn more about living with Dravet syndrome or other rare epilepsies, visit our Epilepsy and Rare Syndromes page or our partners at the Dravet Syndrome Foundation.

References

1. Dravet, C. (2011). The core Dravet syndrome phenotype. Epilepsia, 52(Suppl 2), 3–9. https://doi.org/10.1111/j.1528-1167.2011.02994.x 
2. Jansson JS, et al. Intellectual functioning and behavior in Dravet syndrome: A systematic review. Epilepsy Behav. 2020;108:107079. https://pubmed.ncbi.nlm.nih.gov/32334365/ 
3. Bailey LD, Gammaitoni AR, Galer BS, Schwartz L, Schad C. Constructive vs destructive coping methods in siblings of patients with epileptic encephalopathies: targets for intervention. Poster presented at: National Organization for Rare Disorders (NORD) Rare Diseases & Orphan Products Breakthrough Summit; October 15-16, 2018; Washington, DC.

CareCompass™ is a trademark of the UCB Group of Companies.
©2025 UCB, Inc., Smyrna, GA 30080. All rights reserved. US-DA-2500489