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We know how hard it is to care for a child with complex medical needs. We are here to support you and ease these difficulties any way we can. This guide was created as a resource for you and your family to navigate your care and partnership with our team at the Leukodystrophy Center.
Got Transition® is a federally funded center that offers many resources for young adults and their families to support them in their journey as they transition from pediatric to adult healthcare. Access resources here.
A primary care provider is an important health professional who sees you for most of your medical needs, routine screenings, wellness visits, and non-emergency illnesses. Finding the right one is an important step in taking care of your health.
Use this primary care finder to find free and low-cost medical care in Philadelphia.
If you are a high school or a college student with a disability, you have come to the right place! The Student Lounge has resources designed to help you learn more about how to prepare for and be successful in postsecondary education and careers.
Transitioning can be an overwhelming process. Pacer’s National Parent Center on Transition and Employment offers resources on the transition process for middle school and high school, postsecondary education, employment, benefit programs, and independent and community living.
Disability Rights Pennsylvania (DRP) offers a self-advocacy guide for transition to adulthood, with information to help you in advocating for yourself or someone else with a disability.
These webinar videos from the Leukodystrophy Symposium provide up to date information on the best diagnostic and disease management practices, with an emphasis on how to provide patient and disease centered care during the COVID-19 health emergency.
It provides multidisciplinary scientific education for healthcare professionals, and promotes excellence in research and services for people with cerebral palsy.
Educates, advocates and provides support services to ensure a life without limits for people with a spectrum of disabilities.