Resources for SDS Families

SDS Patient/Family Support Groups

• Facebook Support Group
• Yahoo Group (Shwachman Syndrome)
• Yahoo Group (Shwachman Diamond)

Registries for SDS Patients

• Severe Chronic Neutropenia International Registry
• Shwachman-Diamond Syndrome Registry

Nutrition/Weight Gain

• Calorie Boosters: Tips for Tanking Up
• High Calorie Food for Toddlers
• High Calorie/High Protein Diet
• How to Help Child Gain Weight
• High Calorie Recipes

Enzymes

• Pancreatic Enzyme Replacement
• Enzymes through a Straw (by Pattie Curan)

Hematology

• ANC Calculator
• Bone Marrow Aspiration and Biopsy
• Neupogen Information for Patients and Caregivers
• Be The Match Registry

Financial Aid

• Always fill out the Patient Assistance forms at hospitals in order to hopefully receive a discount on your accounts--we didn't expect to receive a discount due to income restrictions but we received a 68% discount!
• Abbott Patient Assistance Program (to possibly get Pediasure Peptide at a discount)
• Severe Chronic Neutropenia International Registry (can receive Neupogen at no cost if enrolled in the registry)
• Live2Thrive Program (Zenpep enzymes--a program that offers a rebate on prescription copay and free vitamins and nutritional supplements)
• Supplemental Security Income
• Medicaid (click on your state)