الأحداث
Traveling with your medically complex child
In this extended discussion, we will hear from a group of DEE moms about how they manage and plan for adventures and travel with their medically complex children - both nationally and internationally. Hear all about packing, planning, meds, supplies, special equipment and more. Ask your questions of these seasoned mom travelers and learn their…
Sleep & DEEs
Join us as we discuss sleep issues within the DEE and rare epilepsies community.
How to Get Grants and Funding for Medical Expenses
DEE-P Connections, in association with DYNC1H1 Association, is excited to welcome Advocacy Abby, who will assist families with medically complex children in navigating the complexities of grants and other funding sources.
ALL ABOUT The Connected Parent
Join us and the founder of The Connected Parent, Julie Walters. The Connected Parent is like Yelp, but for families that have kids with disabilities!
Surviving the Holidays – A DEE-P Chat
Join us as we chat about navigating the holidays with our medically complex kids. From finding the perfect gifts, making memories, or spending time in the hospital we plan to talk about it ALL. We hope that everyone leaves feeling encouraged and knowing they aren't allow during this holiday season.
DEE-P Fundraising Workshop
Want support to start your GivingTuesday campaign? Join us for one of our 30 minute GivingTuesday Workshops. We’ll guide you through the setup process, provide campaign tips, and answer any questions.
DEE-P Fundraising Workshop
Want support to start your GivingTuesday campaign? Join us for one of our 30 minute GivingTuesday Workshops. We’ll guide you through the setup process, provide campaign tips, and answer any questions.
CVI: The Parent Perspective
We are partnering with CVI NOW & Perkins School for the Blind to bring you a parent panel. We will discuss navigating your child’s CVI diagnosis and all that comes along with it.
دردشة دي-بي
In this safe and supportive space, you’ll connect with others who understand the unique challenges of raising a child with a severe rare epilepsies (aka DEEs). Whether you're navigating hospital stays, coordinating multiple therapies, or managing the emotional toll, this group provides an opportunity to share experiences, offer and receive advice, and build a community…
Making sure every inchstone of progress is measured – Update on The Inchstone Project
Join us for an update on The Inchstone Project which is working to make sure that there are assessments to measure the inchstones, not milestones, of progress our loved ones who are profoundly impacted by rare diseases make. This is important not only for measuring every day progress but also to ensure that as genetic…
Growing Together: Navigating the Life Stage Checklist for Families
Join us for an empowering and informative webinar, Growing Together: Navigating the Life Stage Checklist for Families. This session is designed to support parents and caregivers as they navigate the journey from childhood to adulthood for children with complex medical and developmental needs.We will walk participants through the Transition to Adulthood/Life Stage Checklist step-by-step, breaking down key…
The Life-Saving Nature of Epilepsy Surgery
Epilepsy surgery is not a last option and you will hear why as during this session we update you on emerging research around the efficacy and utility of surgical interventions and discuss guidelines on when families should seek out consultation about epilepsy surgery options. Join us as we partner again with the Pediatric Epilepsy Surgery…
