Guide for Parents
Our goal at the Congenital Hyperinsulinism Center is to help you take your child home as soon as possible, either cured of hyperinsulinism or on a safe and manageable treatment plan.
Caring for your child
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Got Transition
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.
The Center for Parent Information and Resources (CPIR)
Provides resources for young people with a disability considering employment, and helps families find a Parent Training and Information Center (PTI) or a Community Parent Resource Center (CPRC) in their area that offer information about early intervention, school services, therapy, local policies, transportation, and much more.
Resource Guide for Adolescent and Young Adult Survivors of Cancer
The Resource Guide for Adolescent and Young Adult Survivors of Cancer offers important resources that may be helpful to adolescent and young adult (AYA) survivors of cancer.
Spina Bifida Program Transition to Adult Care
Learn how we support children seen in the Spina Bifida Program as they grow to prepare for a smooth transition to adult healthcare.
Disability Rights PA Transition Resources
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.
Spina Bifida Program Advisory Board
The Spina Bifida Program Advisory Board collaborates with the clinical team to advocate for patients and empower and educate families.
Pennsylvania Health Law Project: Medical Assistance
The Pennsylvania Health Law Project (PHLP) is a non-profit legal services organization that represents Pennsylvanians who need help getting or keeping Medicaid (Medical Assistance or MA). Their "self help" resource library includes information about medical assistance for workers with disabilities, Medicare/Medicaid dual eligibility, application process for OLTL waivers, and more.
PA Independent Enrollment Broker (IEB)
The PA IEB provides enrollment support for Pennsylvania’s Home and Community Based (HCBS) waiver programs.
Guardianship in New Jersey
A guardian is someone that is legally authorized to act on behalf of a minor or an incapacitated adult to assure that the person’s health, safety, and welfare needs are met and that their rights are protected. New Jersey provides helpful information on obtaining guardianship and a guardianship packet.