Ehlers-Danlos Syndrome : Professor Hamonet launches a new SOS For seventeen years the emeritus Professor Claude Hamonet has carried a huge weight on his shoulders : diagnose and treat patients with a rare and disabling genetic disease, the Ehlers-Danlos Syndrome. A fight of every moment which almost came to an end in July 2013, the Assistance publique - Hospitals of Paris (AP-HP is the public institution of health which exercises the role of regional hospital for Paris and Ile-de-France) having decided to delete his service period at the Hôtel-Dieu, in full restructuring. Your engagement has borne fruit: 25 453 signatures collected during our first petition helped to extend by six months the consultation of the Professor. Despite this, the deadline is very tight to receive 193 patients who already have an appointment. And 200 others on waiting list? And the hundreds who flock to have access to healthcare? There is an urgent need to provide Professor Claude Hamonet with decent means to implement its succession, with the immediate appointment of two additional doctors, who he would form and accompany until 2015. This will allow Professor Hamonet to achieve to the best the care needs of the patients and ensure the sustainability of the consultation for EDS (Ehlers–Danlos syndrome). We also ask to create a permanent EDS consultation in the future Hôtel-Dieu diagnostic center to ensure the reception of all patients and to include the Ehlers-Danlos syndrome in the list of long-duration affections ALD 30, such as this disease will be cost-supported at 100%. Professor Hamonet’s fight is our fight. Help us by signing the petition. More information: ased.fr https://secure.avaaz.org/fr/petition/Syndrome_dEhlers_Danlos_nouvel_SOS/?pv=2 I thank with all my heart all my caring friends who have already signed and shared our new petition and all the ones who are going to do it ! We have already obtained 9640 signatures via internet and at least 1020 via the paper petition but we need many more signatures, at least 25500 before October 11th. Every vote is important. Thousands of EDS patients as me need your help and your support. We really need Professor Hamonet for our access to healthcare, to live better with the disease. We count on you ! WE REALLY NEED YOUR HELP ! PLEASE SIGN AND SHARE OUR FIGHT AROUND YOU... MANY THANKS
Posted on: Sat, 05 Oct 2013 08:35:00 +0000
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