Dr. Artemio Jongco: Building a trusting and open relationship with your medical providers isn't always easy, but one good rule of thumb is to make sure that you're honest about what your expectations are, what your goals of care are, and what you expect from your providers.

Dr. Nicholas Hartog: The one thing I recommend is making sure you have a point person, you have somebody who is in control of the disease, in control of the team, talking with everyone, making sure all the specialists talk, everyone's on the same page, to get the best care out of the team that's helping to take care of your child.

Dr. Hana Neibur: CGD is a hard disease to understand, especially because it can do so many different things. So when you go to see your doctor, it's important to write down your questions before you go, and write down your answers. Get the information you need, and don't be afraid to ask those questions. You need to feel confident in the care your child is getting. And if you don't feel confident, you need to ask more questions.

[Dr. Artemio Jongco:] Patient's family members should feel empowered to demand that their doctors have open lines of communication with everyone on the team involved in delivering care. And then when things don't quite meet your expectations, or you feel that one part of the team isn't quite living up to their job, then make sure you let them know and give them a chance to fix it.