Family Resources

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We are always looking for new resources to share with our families. If you have a resource need you’d like us to provide on our website, please email info@cfcsyndrome.org.

Thank you for visiting.

HEALTHCARE

CMS Toolkit (US Medicaid)

Behavior

Behavior in CFC Syndrome

Seizures

Seizure Hospital Discharge Action Planning

Seizure Action Plan (School)

STATE BY STATE RESOURCES (USA)

LIFE Transitions

Self-Guided Educational Transitions Course (FREE)

Educational and Life Transitions Workshop: https://advocacyuniversity.teachable.com/p/education-transition

Childhood to Adult Transition Guide

Advanced and Caregiver End-of-Life Planning

PALLIATIVE CARE

What is palliative care? One CFC mom’s journey and perspective.

Sibling support

CFC Syndrome Sibling Handbook

Sibling Resources - Sibling Support Leadership Network

FINANCIAL ASSISTANCE

https://www.cfcsyndrome.org/s/StatebyState-IDD-tsgy.pdf