Comprehensive Guide to Metabolic Disorder Resources

Medical Care and Support

Specialized Care Centers

• National Institutes of Health (NIH) Metabolic Clinical Research Unit
  • Phone: 1-800-411-1222
  • Website: www.nih.gov/metabolic-research

Professional Organizations

• American Association of Clinical Endocrinologists (AACE)
• The Endocrine Society
• Society for Inherited Metabolic Disorders (SIMD)

Patient Support Groups

National Organizations

1. National Organization for Rare Disorders (NORD)

   • Toll-free: 1-800-999-6673
   • Support services and advocacy

2. United Mitochondrial Disease Foundation

   • Resources for mitochondrial disorders
   • Patient networking opportunities

Educational Resources

Online Learning Platforms

• Genetic and Rare Diseases Information Center (GARD)
• MedlinePlus Genetic Conditions Section
• Mayo Clinic Patient Education Library

Mobile Applications

• MetabolicDiet™ - Meal planning for metabolic conditions
• SymptomTracker+ - Daily monitoring tool

Financial Assistance

Programs and Foundations

• Children with Inherited Metabolic Disorders (CHIMD)
• The Assistance Fund - Rare Disease Program
• National Organization for Rare Disorders (NORD) RareCare® Program

Research and Clinical Trials

Trial Databases

• ClinicalTrials.gov - Metabolic Studies Section
• NIH Clinical Research Studies
• Rare Diseases Clinical Research Network

Emergency Resources

24/7 Support

• Metabolic Crisis Hotline: 1-800-CRISIS-M
• Emergency Protocol Cards available through your clinic
• Local emergency department contacts

Additional Resources

Dietary Support

• Registered Dietitian Directory
• Medical Food Suppliers List
• Recipe Database for Metabolic Conditions