Resources For Families 


Affordable Care Act

Information about the Affordable Care Act  WSGSC
Fact Sheets: Concurrent Care for Children, Habilitative Services, Health Home Programs and Coordinated Care
Health Insurance Marketplace and Medicaid Coverage for Children with Disabilities The Catalyst Center and the National Center for Medicaid Home Implementation

Consumer Advocacy

The Life Rope: Engagement of Diverse Populations for Recruitment and Representation in Genetics  MSGRC
The National Genetics Education and Consumer Network

Disease Specific

Care of Children With Sickle Cell Disease in the Emergency Department Parent and Provider Perspectives Inform Quality Improvement Efforts  Region 4 Midwest 
Distance Strategies: Sickle Cell Disease, Congenital Primary Hypothyroidism, Phenylketonuria NYMAC
Metabolic Consortium MSGRC
Mile High Down Syndrome Association Health Care Partnership MSGRC
Moving Forward: Your Guide to Galactosemia and Primary Ovarian Insufficiency (POI)   NEGC
PKU Tool Kit   NEGC
Sickle Cell Trait: What You Need to Know Region 4 Midwest
Tips for Getting Formula for Individuals with Inborn Errors of Metabolism (IEM)   NEGC

Education

Adventures of Gene Coloring Book NYMAC 
Definitions  MSGRC
Education for Families  Heartland
Genetics and Your Health Brochures  NYMAC
Genetics Education Materials for School Nurses   NEGC
The Journey Through Diagnosis: A Guide for Families of Children with Genetic Condition Region 4 Midwest
Learn About Genetic Services  MSGRC
Understanding Genetics Guide for Patients and Professionals   NEGC
What to Expect When Your Child is Referred to a Genetics Appointment (Available in English, Arabic, and Spanish) Region 4 Midwest 

 

Family Health History

Family Health History Tool Kit  Heartland 

Medical Food

Medical Food Coverage Survey  SERC
Insurance Coverage of Medical Foods for Treatment of Inherited Metabolic Disorders Region 4 Midwest  

Medical Home

Medical Home Portal  MSGRC
Parent's Role in Specialty Referrals: Views from Both Sides of the Exam Table NEGC
Partnering with Your Doctor: The Medical Home Approach (Available in English, Arabic, and Spanish) Region 4 Midwest  
Pediatric Care Coordination: Beyond Policy Practice, and Implementation Webinar Series National Center for Medical Home Implementation

Newborn Screening

A Parent's Guide to Newborn Screening Video (Available in English and Spanish) SERC  
NBS Connect  SERC
Newborn Screening Brochures (Available in Multiple Languages) NEGC

Region Specific


NEGC
New England Resources Directory 

NYMAC
Needs Assessment and Plan  
State Specific Resources for People with Special Health Care Needs
Genetic Alliance Understanding Genetics:A NYMAC Guide for Patients and Health Professionals (Available in English and Spanish)

SERC
Centers Directory 
Consumer Alliance Workgroup

Region 4 Midwest
State Genetic Programs   
Care Coordination: Empowering Families
 
Heartland
Clinical Genetic Service Search Engine 
Support and Advocacy Organizations Search Engine 

MSGRC
MSGRC State Information 

WSGSC
Family Advocate Workgroup 
Pacific Northwest Regional Genetics Group (PacNoRGG) Publications 

Transition

Healthcare Transition for Parents/Guardians and Young Adults Region 4 Midwest
Receiving A Diagnosis: The Journey from Cope to Hope Region 4 Midwest 
Transition: Psychological Considerations NEGC
Transition Tool Kit NEGC