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  • 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…

  • Real Moms, Real Stories: Advocacy That Inspires

    Join us, for an inspiring and down-to-earth conversation with six incredible moms who are walking the path of advocacy for their disabled children. They’ll share personal stories—real, raw, and powerful—about…

  • DEE-P Chat: Relationships 101 Follow-up

    Join us, for a follow up with your partner for a “DEE-P Chat” with other couples to feel seen and heard. Amanda and Anne will be in attendance to answer…

  • Parent Perspectives: Insights into Medical Decision-Making

    Making major decisions about interventions such as feeding tubes or tracheostomies is one of the greatest responsibilities caregivers face for their child, weighing not only risks and benefits but also…

  • Surviving The Holidays – A DEE-P Chat

    Join us Monday November 17 at 8pm EST as we chat about navigating the holidays with our medically complex kids. We will be sharing gift ideas, how to create memories,…

  • Navigating GI Interventions: From Testing to Treatment

    Join us on December 12 at 3pm CT for a family-centered webinar on GI health in medically complex children. Pediatric gastroenterologist Dr. Sherief Mansi will review feeding and stooling challenges, common testing, and clinical…