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Coordinator of Education, Referral and Advocacy

Family Support and Program Service Referrals

The NNPDF offers the following Family Support and
program service referrals. Please contact the
NNPDF Central Office
 for information regarding:

  1. NPA/B (ASM deficiency) health care provider information folders
  2. NPC health care provider information folders
  3. NPA/B (ASM deficiency) patient and family information folders
  4. NPC patient and family information folders
  5. Personal medical history log
  6. Education of the child who has a neurodegenerative disease
    • NPD
    • Batten disease – similar issues; applicable to NPD children
    • Leukodystrophy
    • Other
  7.  Pediatric dementia information
  8. Gastrostomy information
  9. Respiratory information
  10. Teens and chronic illness/Transition to adult status (health care, legal issues, financial, etc.)
  11. Sibling Issues and Support
  12. Bone marrow transplantation/stem cell transplantation
    • Process
    • Issues
  13. Approaches to care of the caregiver
    • Self-assessment
    • Caregiver’s Bill of Rights
    • Twenty Ways (and then some) to Care for Caregivers
  14. Medication suggestions (listserv and other) – REMEMBER TO ALWAYS REVIEW WITH YOUR PHYSICIAN before starting any new medication
    • Saliva management
    • Sleep
    • Other
  15. Hospice and respite resources
    • Local
    • National
  16. Grief support
  17. Middle and High School Curriculum Supplement
  18. Information and Resources about Late-onset NPC
  19. Managing Tantrums
  20. Incontinence management information (planned)
  21. Nutrition information (planned)
  22. Alternative medications and therapies, supplements and off-label use (planned)


06/16/2016 jjb