Palliative Care Needs of Children With Rare Diseases and Their Families

Conditions

• Trisomy 13 Syndrome
• Arthrogryposis Congenita Multiplex With Intestinal Atresia
• Asparagine Synthetase Deficiency
• CHARGE Syndrome
• Early Infantile Epileptic Encephalopathy
• FOXG1 Syndrome
• KBG Syndrome
• Noonan Syndrome
• Severe Hemophilia A
• Short Bowel Syndrome
• Beta-Propeller Protein-Associated Neurodegeneration
• Brain Injury of Prematurity With Periventricular Leukomalacia
• Chromosome 17p13.3 Microdeletion Syndrome
• Chromosome 1q43-1q44 Deletion
• Cockayne Syndrome
• Congenital Diaphragmatic Hernia
• End-Stage Renal Disease With Cloacal Anomaly
• Mitochondrial Depletion Disorder
• Severe Factor VII Deficiency

Interventions

• BEHAVIORAL: Family Centered pediatric palliative care for family caregivers of children with rare diseases.

Sponsor

Children's National Research Institute

Collaborators

• [object Object]
• [object Object]
• [object Object]