Patient and Family Advocacy Groups

When Maggie was just a few months old, I attended a cystic fibrosis education night put on by the local CF patient and family advisory group that I didn’t know existed until that night. Not only did I learn about CF and how our local CF clinic compares to others across the country, I found a way to turn the pain from Maggie’s diagnosis into a new purpose. That night, I signed up to join the group, and have been attending the monthly meetings for over a year.

It was one of the best decisions I could have made. I would recommend joining such a group to any parent of any child with any condition. At each meeting, we discuss what we would like to accomplish. From the quarterly newsletter to changing hospital policies to planning the next education night, there is always something to be done. Being involved with the clinic team and other parents makes me feel like I am making a difference in my child’s care.

If you are interested in joining an advisory group, check with your local hospital. Many times, the groups exist but families aren’t told about them, especially right after diagnosis. There is so much information that the doctor needs to give you, and he doesn’t want to overwhelm you, so telling you about such a group is the last thing on his mind.

If you talk to your hospital and find out that such a group doesn’t exist, consider starting one. Talk to your child’s doctor about it and ask him to speak with other families on your behalf. Privacy laws won’t allow him to give out other families’ information, but you can ask him to give your information to any families who may be interested. If there is a social worker involved with your child’s care, you can speak with him as well. You’ll want at least one member of the care team involved in the group anyway, so speak with them about any interest they have.

Working with other families and your child’s care team will not only provide support for you, but will allow you to make changes to the system and help other families. Having the power to make a difference in the wellbeing and care of your child and other children with the same condition is a great accomplishment.

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About Nancy

I am a freelance writer focused on parenting children with special needs. My articles have been featured in numerous parenting publications and on I am the former editor and publisher of Vermont HomeStyle Magazine. I am a wife and mom to a two daughters, one with cystic fibrosis and one who is a carrier for cystic fibrosis.