1. Alone we are rare, together we are strong
Allies after the NICU
Alone we are rare, together we are strong

5. Define Rare Disease in US:
A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.
Define rare disease in Europe:
A disease or disorder is defined as rare in Europe when it affects 5 or fewer in

6. Preliminary number of births for the United States in 2015 was 3,977,745.
Preterm birth rate (based on obstetric estimate of gestation) was up slightly in 2015 to 9.62%, the first increase in this rate since 2007.
The low birthweight rate was also up in 2015 to 8.07%.
As these numbers exists and increase so does the number of infants affected by rare disease.
National Vital Statics Report Vol 65 #3

7. RARE DISEASES THAT EFFECT INFANTS AND/OR CHILDREN
Apnea, Infantile
Bronchopulmonary Dysplasia
Eosinophilic Esophagitis Syndrome
Ichthyosis prematurity syndrome
Necrotizing Enterocolitis
Patent ductus arteriosus

8. RARE DISEASES THAT EFFECT INFANTS AND/OR CHILDREN (con’t)
Periventricular Leukomalacia
Respiratory distress syndrome infant
Retinopathy of Prematurity
Rhombencephalosynapsis
Short Bowel Syndrome

11. Melanie Gibson, CAE
Director of Membership at NORD

13. NORD Reports/Database contains
Synonyms
Subdivisions
General Disucssion
Signs & Symptoms
Causes
Affected Populations
Related Disorders
Standard Therapies
Investigational Therapies
Resources
Supporting Organizations
References

24. Current & Planned Surveys:
Questionnaire (list name)
Longitudinal
Schedule of data collection
Participant Profile No
Baseline
Medical Diagnostic Data
Treatment & Review of Systems
Yes
Baseline, 4, 8, 12, month
After each hospitalization
Yearly – based on time of diagnosis
Quality of Life (age appropriate)
Baseline, 4, 8, 12, month After each hospitalization
Biannual – based on time of diagnosis
Neurodevelopmental Assessment Results
biannual
Caretaker’s Coping Level Assessment
Baseline at enrollment
Biannual
Family History
Baseline, yearly update
Prenatal Data

25. Our goal in founding Morgan’s Fund has always been to be for others the resource which we could not find.