NATIONAL RESOURCES
NATIONAL MARFAN FOUNDATION
22 Manhasset Avenue
Port Washington, NY 11050
PHONE: 1-800-862-7326
WEBSITE: HTTP://WWW.MARFAN.ORG
EMAIL: [email protected]
The National Marfan Foundation was founded in 1981, during a time where Marfan syndrome was largely misdiagnosed or misunderstood. Over the years, the National Marfan Foundation has aided in advancing research for treatments and quality of life improvements from those who are affected, and has provided (and will continue to provide) a supportive network for those affected by Marfan syndrome and related disorders (The Marfan Foundation, 2014).
NATIONAL GUIDELINE CLEARINGHOUSE
WEBSITE: http://www.guideline.gov/content.aspx?id=47547&search=marfan
The National Guideline Clearinghouse website provides an unofficial series of guidelines for diagnosis, evaluation, and long-term follow-up for those who believe they may have Marfan syndrome.
EDUCATION AND SERVICES
The Marfan Foundation: Need-To-Know Information for the Teacher The Marfan Foundation's official website has an entire handbook dedicated to providing educators with information about Marfan syndrome, and how it may affect students who are living with the disorder. The handbook is available for free, online in *.PDF format, and provides educators with recommended accommodations and ideas for supportive classroom environments for students affected by the syndrome. |
MDLC: Special Education Rights Handbook
This handbook was created to provide parents, guardians, and caregivers of children who are school-aged with information about the special education process so that they can properly advocate for their children. |
LearnAlberta is a Canadian based educational resource that has an entire section of its website dedicated to providing educators with implications for planning and general awareness for students with disabilities. The specific section linked is the information page for educators about Marfan syndrome, which provides information about the disorder as well as a series of guidelines for planning for teaching a student with Marfan syndrome.
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The Marfan Foundation: Need-To-Know Information for the School Nurse
While educators need to be informed of Marfan syndrome and how it may affect their students who are living with the syndrome, the school nurse also plays a large roll in the prevention of general illness or injury. Therefore, the school nurse must be educated on Marfan syndrome perhaps even more than the educator, since they will be responsible for their care should anything go wrong during school hours. The Marfan Foundation has created a need-to-know guide similar to their educator version for school nurses. |
BOOKS
Clicking any of the images will take you to an amazon.com purchase page
Images used on this page were retrieved from:
http://www.marfan.org
http://www.amazon.com
http://www.mdlclaw.org
http://www.learnalberta.ca
http://www.guideline.gov
http://www.marfan.org
http://www.amazon.com
http://www.mdlclaw.org
http://www.learnalberta.ca
http://www.guideline.gov