Resources

Organizational Links for Families

• Catalyst Center: Improving Financing of Care for Children and Youth
• Coalition for Genetic Fairness
• Genetic Alliance
• Health Resource and Services Administration: Maternal and Child Health Bureau
• National Newborn Screening and Genetics Center
• National Organization for Rare Disorders (NORD)
• New England Connection for PKU and Allied Disorders
• New England Consortium of Metabolic Programs
• New England Newborn Screening Program
• New England Regional Genetics Group

The following websites list laboratories which offer rare disease genetic testing:

• National Laboratory Network for Rare Disease Genetic Testing (NLNRDGT)
• Orphanet

The following websites give clinical information about genetic conditions:

• Gene Clinics
• Online Mendelian Inheritance in Man
• Genetics Home Reference
• American College of Medical Genetics - ACT Sheets
• Organization of Teratology Information Services (OTIS)