Family Resources

Spinal Cord Injury Association

http://www.spinalcord.org/

Soft – The Support Organization For Trisomy 18, 13, And Related Disorders

The Support Organization for Trisomy 18, 13, and Related Disorders (SOFT) is a network of families and professionals dedicated to providing support and understanding to families involved in the issues and decisions surrounding the diagnosis and care in Trisomy 18, 13 and related chromosomal disorders. Support is provided during prenatal diagnosis, the child’s life and after the child’s passing. SOFT is committed to respect a family’s personal decision, and to the notion of parent-professional relationships.
http://www.trisomy.org

National Center For Medical Home Implementation

The Medical Home is the model for 21st century primary care, with the goal of addressing and integrating high quality health promotion, acute care and chronic condition management in a planned, coordinated and family-centered manner… read more at http://www.pediatricmedhome.org/

Feeding Tube Awareness Foundation

The Feeding Tube Awareness Foundation website is a great resource to reseach various feeding tubes, their risks versus benefits and answers to common questions for children with feeding tubes.
The Feeding Tube Awareness Foundation is dedicated to providing parents and caregivers with the information needed for day-to-day life with a tube fed child. Moreover, they strive to raise awareness so that children who are tube fed enjoy increased acceptance in society and parents have greater support in their care.
http://www.feedingtubeawareness.com/