Genetic Condition Support

Child Health Specialty Clinics (CHSC) is Iowa’s Title V program for children and youth with special health care needs. CHSC has a program to provide family support to Iowa families of children with six heritable disorders through social media. Considering Iowa’s sparse population, privacy regulations, and rare conditions, families may not naturally meet others with the same condition.

Real Time Family Support through Social Media uses Facebook, Twitter, and YouTube to connect Iowa families of children/youth with six genetic disorders: sickle cell anemia, PKU, hearing loss, Ehlers-Danlos Syndrome, Marfan Syndrome, and cystic fibrosis.

We have four goals:

• Connect families with each condition
• Provide information about the condition and public health topics in plain language
• Engage families in advocacy efforts
• Inform health care providers of the importance of family support