What You Need To Know

Blog Post

When There's More Than One Person With CF in the Same School

Although cystic fibrosis is a rare disease, in some schools there may be more than one person with CF present. Germs are a major concern for people with CF, but there are steps you can take to help students and faculty with CF lower the risk of cross infection.

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  1. Article

    Individualized Education Programs (IEPs) and 504 Plans

    To help ensure your child’s needs are being met at school, you may consider requesting an Individualized Education Program (IEP) or a 504 plan.

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  2. Resource

    Letter for Schools

    This template is intended to guide parents of children with CF in writing a letter to school staff to prepare them for the special accommodations that a student with CF may need. Your CF care team may also have a sample letter or ideas on how the school can help.

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  3. Article

    School Transitions for People With CF and Their Families

    As children with cystic fibrosis transition toward greater independence at school and at home, they will also take greater responsibility in managing their disease. To help guide you and your child through these transitions, people with CF and their families share their experiences and advice.

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  1. Topic

    How Can You Avoid Germs?

    While germs cannot be completely avoided, there are many things you can do to help reduce the risk of getting or spreading germs.

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  2. Blog Post

    Planning for CF at School

    Sending our son to school was scary, but we have a plan to keep him healthy.

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  3. Blog Post

    Teaching the Teachers: Putting a 504 Plan Into Practice

    No matter how good your school district is, be prepared for unexpected challenges when getting your 504 plan in place.

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  4. Blog Post

    Finding a Balance Between CF and High School

    High school is hard enough on its own, but throw cystic fibrosis into the mix and it gets a million times harder.

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  5. Blog Post

    What My Children Taught Me About Explaining Their CF

    As a frequent public speaker, I was surprisingly nervous the day before I spoke to my kids' classmates about the realities of cystic fibrosis several years ago. Luckily, my kids knew just what to say to calm my nerves.

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  6. Blog Post

    Tips for Sending Your Child With CF to Kindergarten

    Sending your child to kindergarten for the first time is hard enough, but when your child has cystic fibrosis, it is even harder. Here’s how I handled my daughter’s transition to kindergarten and the lessons I learned along the way.

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  7. Blog Post

    Managing School From a Hospital Room

    The only thing that is certain in my life is the uncertainty of my teenage daughter’s next hospital stay. Despite this, she has somehow managed to supervise her own academic life from a hospital room.

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