Helpful Links
The following links are provided to be useful to you.
General/Genetics
- Draft Consensus Guidelines for Diagnosis and Treatment of SDS
- Genetics Home Reference: Shwachman Diamond Syndrome
- National Cancer Institute: Inherited Bone Marrow Failure Syndromes
- Genetic Alliance: Understanding Genetics
Rare Disorder Organizations
Neutropenia & Bone Marrow Biopsies
- MedicineNet – Neutropenia
- Medline Plus: Bone Marrow Biopsy
- Medscape: Bone Marrow Aspiration and Biopsy
Bone Marrow Transplant & Cord Blood
- Be the Match Bone Marrow Registry
- Delete Blood Cancer
- Blood and Marrow Transplant Information Network
- Family Cord Blood Services
- Cord Blood: Newborn Possibilities Program
- Children’s Hospital Oakland Research Institute: Sibling Donor Cord Blood Program
- St. Louis Cord Blood Bank
Diagnostic Testing for SBDS Gene
- SickKids: Division of Molecular Genetics
- GeneDX: DNA Diagnostic Experts
- Johns Hopkins Medical Institutions: DNA Diagnostic Laboratory
- AmbryGenetics
Understanding Lab Results
- Cytogenetic Resources (Help to interpret your bone marrow biopsy report)
- University of Washington: Calculate ANC
Enzyme Therapy
- Medscape: Exocrine Pancreatic Insufficiency Treatment & Management
- CF Health Matters: Enzyme Guidelines for Children with Cystic Fibrosis
Nutrition
- Nutrition for Kids
- Kids Health: Recipes for Kids with Cystic Fibrosis
- Standford Children’s: Feeding your Child with Cystic Fibrosis
- Framingham State University: High Calorie Foods for Toddlers
- KidsHealth.org – Vitamin Chart
- KidsHealth.org – Mineral Chart
Financial Support
- Social Security Online: Supplemental Security Income (SSI)
- Social Security Disability
- State Medicaid
- CDC: Find Early Intervention Programs in Your State
Professional Research Article Databases
Prescription Help
- Live2Thrive (Zenpep)
- Severe Chronic Neutropenia International Registry (SCNIR)
- Partnership for Prescription Assistance
- Prescription Hope
- NeedyMeds
Speech/Language Development
School/Learning/IEP’s
- Students With Chronic Illnesses: Guidance for Families, Schools, and Students
- Center for Parent Information and Resources: All about the IEP
- Center for Parent Information and Resources: Section 504 of the Rehabilitation Act of 1973
Transition Care from Pediatric to Adult
Agencies that Help with Medical Travel
- Corporate Angel Network
- Air Charity Network
- American Airlines-Miles for Kids in Need
- Angel Flight
- Miracle Flights for Kids
- National Patient Travel Center
Health Care Support/Tools
Creating a Care Page