Helpful Links

The following links are provided to be useful to you.


Rare Disorder Organizations

Neutropenia & Bone Marrow Biopsies

Bone Marrow Transplant & Cord Blood

Diagnostic Testing for SBDS Gene

Understanding Lab Results

Enzyme Therapy


Financial Support

Professional Research Article Databases

Prescription Help

Speech/Language Development


Transition Care from Pediatric to Adult

Agencies that Help with Medical Travel

Health Care Support/Tools

Creating a Care Page


Shwachman-Diamond Syndrome Registry
Global Genese Rare Foundation Alliance
Genetic Alliance
NORD 2021 Platinum Member
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