Children with rare diseases sometimes suffer different academic obstacles and challenges while attending school. However, there are certain programs and resources available that can help, such as 504 plans and Individualized Education Plans (IEPs). But what exactly is a 504 plan or an IEP? And how do I obtain them?
The main difference between the two is that a 504 plan modifies a student’s regular education program in a regular classroom setting. A 504 plan is monitored by classroom teachers. A student with an IEP, on the other hand, may receive different educational services in a special or regular educational setting, depending on the student’s need. IEP programs are delivered and monitored by additional school support staff.
Donna Cutler-Landsman, Educational Consultant and Advocate
Donna regularly works with parents and school districts to better understand the unique learning needs of students with rare diagnoses. She has presented at numerous conferences both in the United States and abroad and has produced a webinar series for the Dempster Family Foundation. She is author of the books, Educating Children with Velo Cardio Facial Syndrome and So What’s the Difference.
Keri Huddleston, Speech Language Pathologist and Assistive Technology Specialist
Keri Huddleston is a nationally recognized speaker and has advocated on behalf of children with rare conditions and their families for over 20 years. She works closely with school staff and families to help assess the needs of children, provide necessary resources, training and support so that students can access their education, and works with IEP teams to ensure students’ needs are being met.
Evan Farrar, Crisis Intervention and Family Support Counselor
Evan Farrar has worked with the Prader-Willi Syndrome Association (USA) since 2007. Evan works with parents and schools to help foster strong collaborative relationships and appropriate educational environments for students with PWS. In addition to Evan’s work with parents, he also helped to create PWSA (USA)’s Wyatt Special Education Advocacy Training (WSEAT) for parents of children with PWS and the PWSA (USA) Special Education Advisory Board. Evan has an M.A. in Mental Health Counseling.
Daniel Levine, Founder & Principal, Levine Media Group
Daniel Levine is an award-winning business journalist who has reported on the life sciences, economic development, and business policy issues throughout his 25-year career. Since 2011, he has served as the lead editor and writer of Burrill Media’s acclaimed annual book on the biotech industry and hosts The Burrill Report’s weekly podcast. His work has appeared in The New York Times, The Industry Standard, TheStreet.com, and other national publications.