Going to school and getting a job are often major milestones of growing up. Living with a rare disease can make it difficult—but not impossible—for some to do these things. Whether you need information about educational support programs or want to know what to tell your employer, #RAREis Transitions can help you navigate.

The content in this section may not be applicable in all countries.

Education Employment


What is an educational support plan?

It is a plan listing different types of academic accommodations that are individualized to the specific needs of the student. The Individuals with Disabilities Education Act (IDEA) gives eligible children with disabilities the right to receive special services and accommodations.

Why should I get ready?

The proper support and accommodations can create a better learning environment to help your child develop and reach their full potential in school.

Who can help me?

  • Special education departments in your school or the school district
  • School social workers
  • Disabilities Service Office of your college or university
  • Your advocacy organization

When should I start?

Under Part C of IDEA, states provide for early intervention services for children younger than three (3) years of age if a disability is suspected or known. Contact your state’s Part C coordinator for more information. You can start your search here. Children three years and older can receive support in their local school system. Contact your school and begin the conversation a few months before your child turns three.

Because people living with rare diseases may need some extra support at school, it’s important for families to know about the support tools available to them. An individualized education program (IEP) or a 504 plan may help students facing learning challenges get the extra support they need and deserve. The table below shows the differences between these two programs.

IEP 504 Plan
What is it? A legal written document that’s individualized for any student in a public school who qualifies for special education A legal plan for any student in a public school who has a disability
Who is eligible? Student must fit 1 of 13 disability categories, which include autism, intellectual disability, and emotional disturbance Student can have any disability, including physical or mental impairment
What is in it? Document outlines specific and measurable goals and includes:

  • How the student is doing currently
  • How educational services will be delivered
  • When services start
  • How the student will be able to participate in class
Doesn’t have to be written or list specific goals, but includes:

  • Specific accommodations for the student to participate in the classroom
  • Who will provide services and support
  • Who is responsible for making sure the plan is carried out
Who creates the program? By law, a multi-person team, including:

  • The student’s parent
  • The student’s teacher
  • A special education teacher
  • A school psychologist
  • A special education services representative

You can also have representatives weigh in from other classes such as gym, art, or music that aren’t part of the core classes, but are important for development.

No legal standard regarding who is involved, but typically includes:

  • The student’s parent
  • The general classroom teacher
  • A special education teacher
  • The school principal
How often is progress reviewed? Required at least once a year Not required, but usually once a year
How much does it cost? No cost to families No cost to families
Who funds the program? The state receives money for eligible students from the U.S. Department of Education The state doesn’t get extra money for eligible students, but the federal government can penalize schools for not helping students
How much does it cost? No cost to families No cost to families
Key takeaway A special education program is customized for a student who meets very strict criteria Support and services are offered, but not customized, for a student who has a physical or mental impairment


Get Started

Get started with the U.S. Department of Education’s guide to IEPs and downloadable brochure. A Parent and Educator Resource Guide to Section 504 Plans can be found here.

Horizon Therapeutics is not providing legal advice. The company is providing this information as general knowledge. If you need legal advice, you should retain legal counsel.

Advocating For Your Child With a Rare Disease At Their School provides general tips and strategies and describes educational support options for children who have rare diseases that may impact learning.

Optimizing Your Loved One’s Learning and Potential At School is a recorded webinar discussing available programs and resources to help children with rare diseases who may be affected by different challenges at school.


What should I know about employment with rare disease?

You are protected by the Americans with Disabilities Act (ADA) if you have a physical or mental impairment that substantially limits a major life activity. The law requires employers to make a reasonable accommodation to the known physical or mental limitations of otherwise qualified individuals with disabilities unless it results in undue hardship and applies to any business with 15 or more employees.

Should I disclose my condition or disability to my employer?

Disclosing a disability to your employer is not required; however, in order to benefit from ADA protections, you must disclose your disability.

What do I need to disclose?

There is no required information to share and disclosure will be different for everyone. If you have a visible disability, it is often helpful to explain how you plan to accomplish work tasks. If your condition is not as visible, you will have to decide what information you feel comfortable revealing. The following information is helpful:

  • General information about your condition
  • Why you are disclosing this information (for example, if you need accommodations)
  • How the condition does or does not affect your ability to perform key job tasks
  • Types of accommodations that have worked for you in the past
  • Types of accommodations you anticipate needing in the workplace

Who should I tell and when should I tell them?

It is best to disclose your condition on a “need-to-know” basis. An appropriate person would be someone in the human resources department, your immediate manager or the supervisor responsible for managing employees.

Under ADA law you are entitled to:

  • Have information about your disability treated confidentially and with respect
  • Seek information about hiring practices
  • Disclose your disability at any time
  • Receive reasonable accommodations for an interview
  • Be considered for a position based on your skill and merit
  • Have respectful questioning about your disability for the purpose of determining whether you need accommodations and if so, what kind

The law also requires that you:

  • Disclose your need for any work-related reasonable accommodations
  • Bring your skills and merits to the table
  • Be truthful

For more information about employment and your rights, the U.S. Department of Labor has additional resources on their website.

Horizon Therapeutics is not providing legal advice. It is providing this information as general information. If you need legal advice, you should retain legal counsel.

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