Children with X-linked hypophosphatemia (XLH) — a rare genetic disorder characterized by phosphate deficiency — may experience difficulties in carrying out everyday activities such as schooling. Therefore, they may require special accommodations at school to assist in their education.

Individualized education plans for children with XLH

Parents of a child with XLH should work with the administrators at their child’s school to come up with an individualized education plan (IEP) or a 504 education plan to accommodate their child’s needs.

To qualify for an IEP, a child must have a disability recognized by the Individuals with Disabilities Education Act, a federal law that provides educational rights and protection to children with disabilities. IEP is a customized learning plan that details the goals for a child’s education, which is drawn up by school authorities, in collaboration with the child’s parents and medical team. This plan includes yearly planning and progress reports.

The 504 education plan ensures that children with special needs get extra support in the regular classroom, which may include having an aid in the classroom, more time to work on tests or homework, or a keyboard for taking notes.

Generally, children are evaluated to determine whether they qualify for an IEP or a 504 plan. These plans are assessed on a yearly basis or at the request of parents.

A child with XLH can experience physical disabilities so an adapted physical education plan, developed by the child’s parents, school authorities, and physical education teachers, would help cater these classes to the child’s needs.

Other school requirements for children with XLH

Children with XLH should feel welcome to participate in all activities as best they can despite their physical limitations. They may need ramps, lifts, accessible toilets, changing places, and specialized equipment, as well as help in writing notes, more time while taking tests and assignments, and extended breaks during the day to overcome fatigue.

One issue that warrants attention is bullying. School authorities should ensure a positive environment so that all children can participate in activities in a friendly atmosphere.

The school staff may not be familiar with XLH and its symptoms, so they should be informed about what to do and who to contact when the need arises. They should also have information about how to administer any needed medications for children during school hours.

Children with XLH may prefer to have two sets of textbooks — for home and school use — so they don’t have to carry heavy loads to and from school.


Last updated: Jan. 17, 2020


XLH News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.