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Hi Dr Driscoll there is a conference to be held in India in 2017 with leading members of the EDS Medical community from all around the world. The objective is to discuss re-classification of EDS diagnosis. Given you are an excellent advocate for the EDS community AND you have first hand knowledge and experience of EDS yourself AND you have medical training therefore able to understand from all perspectives, we were wondering why you haven’t been asked to join in and provide your invaluable knowledge? There is a concern in the EDS community that those on the panel are not fully representative of the EDS community from across the various spectrums and as such any changes made to the diagnostic criteria may NOT include or take into consideration the broad spectrum of needs within the EDS community. The forum Agenda states there are various Stakeholders including advocate Patients and Care givers (as well as many Specialists from various Medical disciplines) however when we look at the Stakeholders involved there is not a true representation at all. Also questions have been raised as to why it is being held in India? We were just really surprised you weren’t invited as we feel your input would be paramount to this project or maybe you were asked and were not able to attend for some reason? Here is the Agenda in regards to the meeting http://ehlers-danlos.com/wp-content/uploads/EDS-Conf-India-2017-FNL4-form.pdf – please say you are going and there has been a misunderstanding? 🙂
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