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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.
Your kidneys are your body’s natural filtration system. It’s important to keep them healthy so they can perform this vital task. Eating the right foods and snacks can support kidney health. Check out these Kidney-friendly recipes for kids!
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.
The International Rett Syndrome Foundation (IRSF) is laser-focused on creating a world without Rett syndrome. For nearly 40 years, we have fueled life-changing advancements in research toward a cure.
The Rett Syndrome Primary Care Guidelines provide suggested visit schedules by clinical area of assessment, specific concerns to look for and timelines for follow up appointments. Download today to ensure the best care for your child.
Gift of Life is the organ and tissue procurement organization (OPO) serving eastern Pennsylvania, southern New Jersey and Delaware.
NephHope was started by parents of a transplant child whose focus is to find a treatment/cure for those diagnosed with nephronophthisis and Senior-Loken syndrome through research funding. The foundation also works to increase awareness of the disease and provide support to families.
KidsHealth is a great resource for parents, kids, teens and educators to learn about different illnesses and offer supportive resources. It also provides information on other topics such as body health, good hygiene, puberty, etc.
Provides information for newly diagnosed patients, including kidney disease diagnosis, how kidneys work, coping strategies, as well as diet and exercise and many other topics.
AGSAA provides information about Aicardi-Goutières syndrome, resources for families and physicians, support groups, research information and more.