Resources

General Lysosomal Disease Resources

• The Emily Center Family Health Library at Phoenix Children's
• Rare Disease Toolkits
• Lysosomal Disease Network
• National Organization for Rare Disorders (NORD)

Camps and Respite Care

• The Painted Turtle Camp for Children with Medical Needs
• Fabry Family Weekend Camp
• Ryan House

General Parent and Youth Resources

• Raising Special Kids
• Amanda Hope Rainbow Angels
• "Transitions Growing and Managing your own healthcare: What every teen living with an LSD needs to know to manager their healthcare" by Dawn Laney (available through Amazon)

Financial Support Programs

• Patient Services Incorporated (PSI)
• National Organization for Rare Disorders (NORD)
• The Assistance Fund
• National Gaucher CARE Foundation (NGCF)
• PAN Foundation

Fabry

• Fabry Support and Information Group (FSIG)
• National Fabry Disease Foundation
• "Joe Learns about Fabry Disease" by Dawn Laney (available through Amazon)
• "Dani Goes to Fabry Camp" by Dawn Laney (available through Amazon)
• "The Long Road to Fabry" by Abigail Carbone (written by a teenager with Fabry) (available on Amazon)

Pompe

"Super Pompe Powers" by Dawn Laney (available on Amazon)

MPS Disorders

National MPS Society

Gaucher

National Gaucher Foundation

LALD and Wolman Disease

LAL Solace (support organization for LALD and Wolman Disease)

Tay-Sachs and Allied Disease

National Tay-Sachs and Allied Disease Association