Tag Archives: rare disease groups

Two national rare disease groups have added their voice to the opposition to the anti water charge campaign EDS Awareness Ireland, which represents over 300 families suffering with EDS (Ehlers Danlos Syndrome), is concerned for its members and the financial burden the water charges will entail. Irish Dysautonomia Awareness represents approximately 100 Irish people who suffer from autonomic dysfunction. Both groups are working together as both conditions often go hand in hand. Chairperson of EDS Awareness Ireland, Yvonne Evans Nevin, said, “Water is a basic human right. Many of our members need extra water for various reasons. Having to monitor or cut down on water usage will lead to many health problems for those living with EDS and Dysautonomia. Many EDS sufferers are unable to work, or only able to work part time. The idea of having to pay hundreds of euros per annum means sufferers will find it difficult to pay for much needed physiotherapy sessions, medications and private …

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