New Family


Welcome to the chILD Foundation! Although none of us chose this path, it is easier to find your way with the guidance and support of others families that have experienced the highs and lows that you will experience. We will try to help you find answers and support to aid you and your child through this journey. Please register with the foundation so we can find out more about you and your family.

The chILD disorders are a varied group of rare diseases that have can have very different outcomes. We have information and support available to all families that are affected by chILD. By registering with the foundation, you gain access to the following:

Family Liaison Program. We can connect you with any families that might be in your area. If there is no one in your area with your diagnosis, we can put you in touch with other patients around the world with your diagnosis. There are also various patient forums available for families to chat with other families. Your liaison can recommend the best forum for you.

Annual Conference. We host an annual conference where families and physicians gather to share the most current information on all forms of chILD. It is a unique experience where you can speak with the world’s leading expert in the diagnosis and treatment of the chILD disorders. It is also a place for the whole family to come and meet other families that share common experiences. The connections and knowledge you can make at these conferences are invaluable!

Educational Materials. We have a comprehensive guide to living with chILD called Get up and Go with chILD. Furthermore, we are continuously trying to create and update informational brochures about specific diagnoses. Many of these are linked to the disease specific pages in the education section of the website.

Help with finding a chILD Expert. We can help you find the nearest chILD center or a pediatric pulmonologist near you that is currently seeing other chILD patients. We can also help you get in touch with Research Network Physicians that can help consult with your local physician to help your chILD get the most up to date treatments.