Rare Lung Diseases
Patient Resources

Call Us to ScheduleAppointments513-636-6771Direct Call

Resources for Patients and Families

The diagnosis of a rare disease can be very difficult to understand and manage for both your child and your family. The Rare Lung Diseases Program at Cincinnati Children’s has compiled support and information resources. The following information may help you better understand your child’s illness, find support from families dealing with the same rare disease and manage the disease, which affects your entire family.

Online Resources

Medical Resources - Cincinnati Children's

End-stage Lung Failure Program
Family Resource Center
Help for out-of-town families, including information on local hotels and motels
Online maps and driving directions to Cincinnati Children’s
Online Billing Services, including information about financial assistance
Project SEARCH
Ongoing Support Resources
Social Services
Medical release of information form (PDF)

Community Resources

NIH Office of Rare Diseases Research
Children’s Interstitial Lung Disease Foundation (chILD)
The LAM Foundation
The Hermansky-Pudlak Syndrome Network.
The Primary Ciliary Dyskinesia Foundation

General Community Resources

Websites with Information about Managing Chronic Illness (.pdf)
Creating a Personal Health Record (.pdf)
General Insurance Information (.pdf)
Possible Prescription Assistance Programs (.pdf)
Suggestions for How To Quit Smoking (.pdf)
Online and Phone Resources for Support to Quit Smoking (.pdf)
Websites with Parenting Information (.pdf)

Pulmonary Medicine

Our lung program is one of the largest, most highly ranked in the nation. We have specialized centers for cystic fibrosis, asthma, sleep disorders and rare lung diseases.

Rare Lung DiseasesPatient Resources

Resources for Patients and Families

Online Resources

Pulmonary Medicine

Connect With Us

Rare Lung Diseases
Patient Resources