Archive for the ‘Disabiity’ Category

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Rare Disease Day – February 28, 2014

Posted on February 28, 2014

Rare Disease Day is an annual awareness-raising event sponsored by the National Organization for Rare Disorders (NORD) in the US. Rare Disease Day is coordinated by EURORDIS at the international level.   The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. […]

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Transportation Can Present Obstacles for the Disabled

Posted on July 22, 2013

Transportation is difficult for the disabled in all countries.  Disabled people should be given more of a right to the roads than they are. Written by ADAM LUKE Cambridge News.co.uk Picture by Warren Gunn “Daredevil Ian Broughall made national headlines last week after police stopped him as he drove his 9mph disability vehicle along the busy […]

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Ehlers-Danlos & the “Spoon Theory” get attention on BBC News

Posted on June 21, 2013

Many EDSers use the “Spoon Theory” to explain their fatigue and limitations due to the acute-chronic pain cycle.  BBC  News presents a series on “insights into disabled life” which shares the “Spoon Theory” with the public audience.  We hope this will increase awareness & understanding of  the compromises we EDSers must make to manage Ehlers-Danlos […]

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Hannah’s Cartoons Improve Communication

Posted on May 18, 2013

Hannah spreads EDS awareness through her creative cartoons. Her Stickman booklets and information cards have enlightened and entertained many readers. They have provided an alternative way for EDSers to express their needs. “Hannah was diagnosed with HMS aged 24, having been symptomatic all her life. She did well in school and university, but a year […]

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Explaining Disability​ – Part of What Makes Us Disabled

Posted on January 23, 2013

Author: Jonathan  Rodis President-Massachusetts  Chapter of the National Marfan Foundation Head-EDS Massachusetts  and New England Support Group       “I wanted to share with you something I wrote to  help everyone understand what it is like to be disabled, what it is like to  have an invisible disability, what to do if you find […]

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Fight to be Upright! Charlie’s Campaign for Lifesaving Surgery

Posted on January 22, 2013

Charlie needs a life saving surgery in Maryland.  Many fund raising activities are raising the money needed. Charlie’s Battle with Ehlers-Danlos Syndrome, Cranio-Cervical Instability, and Chiari Malformation. Charlie was born with Ehlers-Danlos Syndrome (EDS), a genetic disorder he inherited from his mother, Christine. Individuals with EDS have a defect in their collagen, the main component […]

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