Helpful Links for SDS Families and Patients
The following links are provided to be useful to you.
General Genetics
Rare Disorder Organizations
Neutropenia & Bone Marrow Biopsies
Diagnostic Testing for SBDS Gene
Understanding Lab Results
Enzyme Therapy
Financial Support
Professional Research Article Databases
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
- Back to School Letter
- IEP/504 Interactive Toolkit – English
- IEP/504 Interactive Toolkit – Spanish
Transition Care from Pediatric to Adult
Agencies that Help with Medical Travel
Health Care Support/ Tools
Team IMPACT matches your family with a local college sports team to add to your support system and help your child experience the power of sports, the support of mentors, and the simple joy of being a kid.
Prescription Help
Patients in the U.S. without insurance or those with limited coverage for our medicines may be eligible to receive AbbVie medicines at no cost to them through myAbbVie Assist. Visit the website to check for eligibility.
Z-Save®, the ZENPEP Patient Support Program, is designed for patients with exocrine pancreatic insufficiency (EPI) due to reasons other than cystic fibrosis (CF) (such as chronic pancreatitis, pancreatic cancer, or diabetes). Eligible commercially insured patients can save on their medicine and receive free nutritional supplements by mail. Visit the website to check for eligibility.
- Neupogen
Deductibles, Prescriptions and Copays