Archive for the ‘EDS Petition’ Category

Ontario’s Health Ministry hears pleas for Ehlers-Danlos Syndrome support, treatment

Posted on October 1, 2015

Canadians with EDS have not been receiving the treatment they need. Families who have traveled to the U.S. for EDS treatment are seeking reimbursement from the Ontario Health Insurance Plan. Watch the video press conference and interviews with the affected EDS families.

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Maddison Parker Meets with Australia’s Prime Minister to Discuss Ehlers Danlos Syndrome

Posted on October 13, 2014

Maddison is at it again!  This ambitious 11-year-old had a successful meeting with Australia’s Prime Minister! She asked for five minutes and got 30! She feels she got her message across and that it will yield positive results in promoting EDS Awareness and a possible EDS clinic in Australia. PRIME Minister Tony Abbott will fly the flag for Ehlers Danlos […]

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Concern Over Subsidised Water Bills for Ehlers Danlos Syndrome

Posted on October 10, 2014

This Irish mother feels the uncertainty over special water allowance limits are an “insult to the ill”. Her daughter, Lauren, has EDS and intestinal failure. It requires extensive water usage to manage her condition. The government and water department are to publish a list of illnesses which will allow sufferers to have their water bills capped. However, Lauren and her […]

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Hard Budget Choices for Research of Rare-Disease Cures

Posted on March 21, 2014

Difficult decisions need to be made on how to spend research money for “rare diseases”, such as Ehlers-Danlos Syndrome. This NIA study – which began in 2003 –  focuses on 5 disorders, including Ehlers-Danlos and Marfan syndromes. By AMY DOCKSER MARCUS BETHESDA, Md.—Last month, at the National Institutes of Health clinical center here, Sarah Kucharski and Fran […]

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Petition to Remove Dairy Ingredients From Medications

Posted on January 15, 2014

Petition by Ellen Lenox Smith. Many EDSers experience lactose allergies or intolerance.  Please sign this petition to discourage the use of lactose fillers/binders which are frequently added to prescriptions. The collection of signatures and comments is needed for a follow-up letter to the FDA about adding dairy to medications. The National Institute of Diabetes and Digestive and […]

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