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Resources and Affiliations for Families

The Support Organization For Trisomy 18, 13 & 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.

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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.

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Families of SMA

Families of SMA funds and directs the leading SMA research programs to develop a treatment and cure for the disease. The successful results and progress that the organization has delivered, from basic research to drug discovery to clinical trials, provide real hope for families and patients impacted by the disease. The charity has invested over $50 million in research and been involved in funding half of all the ongoing novel drug programs for SMA.

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Continuum Behavioral Health

With offices in Northern Virginia, Columbia Maryland, Chicago Illinois, Philadelphia Pennsylvania, Denver Colorado and Southern New Jersey, Continuum Behavioral Health addresses the needs of those who present with signs or symptoms associated with Autism Spectrum Disorder and related developmental disabilities, and we are unique in our ability to provide a seamless continuum of care starting with diagnosis and extending through assessment and treatment.

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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.

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Clemyjontri Park

Clemyjontri Park in McLean Virginia features a unique playground where children of all abilities can play side-by-side. It is a playground where every child is welcome.

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Children’s Disabilities Information

Essential articles and resources that empower parents of children with disabilities and special needs.

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Believe In Tomorrow Children’s Foundation

Since 1986, Believe In Tomorrow has provided over 600,000 individual overnight accommodations, helping families stay together in the midst of a child’s medical crisis.

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