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Students with primary immunodeficiency (PI) are protected by laws that provide guidelines and requirements for how schools should respond if learning is impacted by a health condition.1 It's important to understand all your educational rights.

Your educational rights as a primary immunodeficiency patient

The National Institutes of Health offer a downloadable guide entitled Students with Chronic Illnesses: Guidance for Families, Schools, and Students. It provides a quick snapshot of both the family's and the school's responsibilities, useful for children with PI. Some of the things you have a right to expect from your school are2:

  • A review of your student's health records.
  • A meeting to discuss health accommodations and education aids.
  • Knowledge of federal, state, and local laws that affect your student's rights.
  • Coordination and training of all staff that interact with the student on a regular basis to meet your student's health and education needs.
  • Strategies to reduce disruption in your student's school activities.
  • Access to needed medications.
  • Preparation for health needs and any possible health emergency.
  • Communication with doctors as authorized by the family.
  • Proper record keeping and measures to protect confidentiality.
  • Ensure that case management is provided as needed.

Families have an important role to play, too, including2:

  • Notifying the school of changes in the student's diagnosis and needs as early as possible.
  • Providing authorization for medication and emergency treatment signed by the healthcare provider.
  • Meeting with the school team to develop plans to address your child's healthcare, educational, and emotional needs.
  • Providing an adequate supply of properly identified medication in pharmacy-labeled containers.
  • Providing means of contacting you or another responsible person in case of an emergency or medical problem.

Support for College Students

If you're starting college or transitioning from one year to the next, the College Prep Series can help. This essential guide offers information and tips to help you manage everything from the application process to housing to campus life. Plus, you'll learn about your educational rights as someone going to college with PI.

Call 1-855-250-5111 for your free copy of the College Prep Series.

Got a question?

Our Patient and Nurse Advocates can help answer your questions about living with and managing PI.

Ask an Advocate