How Much Phe?
"A comprehensive diet-management system for PKU with phe/pro/exchange and calorie values for more than 7,000 foods. Easily record, chart, and export your intake and blood levels."
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The Mid-Atlantic Connection for PKU and Allied Disorders
MACPAD is a network of individuals and families touched by phenylketonuria and allied disorders. Their website provides educational resources, newborn screening information, support groups, upcoming events, and more.
National PKU Alliance
The NPKUA provides information and support to adults and families affected by phenylketonuria, advocates for the reimbursement of medical foods, and invests in targeted and peer-reviewed research. Find helpful resources, educational information, news and events, and how you can take get involved.
PA Independence Enrollment Broker — DHS
Provides enrollment services for applicants who are aging or with physical disabilities applying for Aging, Attendant Care, COMMCARE, Independence, and the OBRA Waivers or the Act 150 Attendant Care Program.
The Ehlers Danlos Society
A non-profit organization supporting collaborative research and education initiatives, awareness campaigns, advocacy, community-building, and care for people with hypermobility spectrum disorders (HSD) and Ehlers-Danlos syndromes (EDS).
What Is Genetics?
This resource from the Roberts Individualized Genetics Center provides a visual overview about basic genetics and explains some of genetic test technologies available.
Notice of New Children’s Crisis Response Center and Children’s Crisis Resources
Philadelphia Department of Behavioral Health and Intellectual disAbility Services provides resources to help children and families access the support they need during a behavioral health crisis. Review this notice for information.
Mitochondrial Inheritance
This resource from the Roberts Individualized Genetics Center explains how people with mitochondrial disease carry a mutation in a gene that affects the way their mitochondria work.
Going to School with Hyperinsulinism
When you're preparing to send a child with hyperinsulinism to school, these are some important steps you should take to make the process easier for everyone.
School and Inflammatory Bowel Disease
IBD symptoms should never get in the way of your child’s success at school. There is a simple way to protect your child’s school experience by creating accommodations for their IBD symptoms and lifestyle.