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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.
The American Academy of Pediatrics’ parenting website offers resources and information about adoption and foster care, including information about becoming a foster parent, discipline, sexual abuse and safety.
PACTS is a network of child serving systems and organizations, under the leadership of the Philadelphia Department of Behavioral Health and Intellectual disAbility (DBHIDS), that provides the most effective practices for traumatized youth and their families.
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.
Zero to Three is a national nonprofit organization that provides parents, professionals, and policymakers with the knowledge and the know-how to nurture early development.
Prevent Child Abuse America is the nation’s oldest and largest organization committed to preventing child abuse and neglect before it happens. Programs and resources informed by science that enable kids, families, and entire communities to thrive—today, tomorrow, and for generations to come are the hallmark of this organization.
AGSAA provides information about Aicardi-Goutières syndrome, resources for families and physicians, support groups, research information and more.
With its mission to improve health outcomes for patients with X-linked adrenoleukodystrophy, ALD Connect provides education and support information for families, research information, ways to get involved, and more.