• Education Advocacy

    Education Advocacy

    Do you have a child in Public School that is having difficulties to be successful and achieve their potential? Is the school not appreciating your wishes and goals for your

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  • Legal Advocacy

    Legal Advocacy

    Recently the alligations of abuse and neglect is on a huge climb in the Ehlers-Danlos Syndrome community. Most of the times it is due to the fact the doctors making

    Read More
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EDS Awareness

  • Child's Life with EDS +

    Life as a child is portrayed as a fun, carefree, enjoyable time till you reach adulthood. Sadly, Ehlers-Danlos Syndrome robs Read More
  • Genetic not Abuse! +

    Like other rare or under-appreciated disorders like Ehlers-Danlos Syndrome many of the times is mistakes for Child Abuse. The staff Read More
  • Life with EDS +

    Many people go without being diagnosed with EDS and become labeled as a hypochondriac. Here is a simple poster with Read More
  • POTS & EDS +

    Many of those who have been diagnosed with Ehlers-Danlos Syndrome have the co-morbid condition Postural Orthostatic Tachycardia Syndrome (POTS). Gabby Read More
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CEDSA Quick Reference

Beyond the Stripes Newsletter


CEDSA would like to keep you updated on new articles, events, research, possible therapy opportunities, or other information that impacts the Ehlers-Danlos Syndrome community. There is no cost or obligation to you other than completing the registration form. We will never sell your information to anyone. It is our promise to you not to bombard your inbox with emails that you do not want, as we can appreciate how hectic your life is and time is precious!

Sign-up today as the first newsletter will be coming out mid summer! Click here to do so!

CEDSA Guides

  • Bullying is a Denial of FAPE
  • IEP vs 504
  • IEP Process
  • IHP in Schools
  • Resolving Education Plan Issues

No Bullying

CEDSA strongly fights for students world-wide that have been bullied by their peers or school staff members. The United States Dept. of Education has strongly affirmed that when a student is bullied; it is a denial of Free Appropriate Public Education (FAPE). A student with a disability is more vulnerable to being bullied than their peers. At times, educators are also a bully to students in their choice of words. Stand-up with CEDSA and say NO to Bullying in Schools and share this guide with your school today! Click Here



Many of the times, parents ask, " What is the difference between an IEP and Sec. 504?". It is a very good question and commonly a confusing choice for schools. The most binding and extensive plan is an IEP which offers the fastest method to enforcement. Section 504 plans cannot alter the access to the general education curriculum where an IEP can. Just because your student is an A student with a disability does not mean that they do not qualify for an IEP. No student can have both plans active at the same time. To learn more please click here to review the simple guide we have created for parents.

IEP banner

Many parents have been intimidated by the IEP process and it's complexity. Many of the times, it is not as hard as some schools want you to believe it is. Every child has a right to a Free Appropriate Public Education (FAPE), and you as a parent are their best advocate. We have created a guide that is very simple to follow on how to start the IEP process. To review this guide on obtaining an IEP please click here! CEDSA helps hundreds of families annually without charge to insure each child with EDS gets a proper education. If you need our help please feel free to contact us!

school health

A hot topic in the Ehlers-Danlos Syndrome community lately is the discussion revolving around truancy. One way to protect yourself from this allegation is to have an Individual Health Plan (IHP) in place for your child. In this plan, you will want wording to the effect that states the student will possibly have frequent absences do to their health issues and medical appointments. The IHP also helps the school staff develop an appreciation for your child's medical needs as it is shared with all who comes in contact with them. To review this guide feel free to click here and share it with others.


Non-compliance of an IEP or Section 504 plan is never easy on the parents, but worse, the impact it has on a student is horrible. The faster a compliance issue is addressed and resolved, the better it is for the student's ability to achieve a Free Appropriate Public Education (FAPE). Compliance issues can be highly emotional at times, which can lead to other unwanted problems, always try to remain calm and professional. CEDSA staff members are very versed in helping families obtain proper compliance with the student's best interest in mind always, if you need help feel free to contact us. We built a guide to help parents who choose to self advocate or who would like to know more about the compliance process. To view this guide please click here