The Association of citizens for rare diseases Life With Challenges in cooperation with the preschool Detska Radost Skopje, begin a series of lectures on the subject of rare diseases and special needs under the project called - Life is a puzzle, let's collect it together for the children joy. We are thankful that the municipality
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The GLF is a scientific meeting sponsored by Genzyme that brings together approximately 200 participants from around the world, including physicians, academics, researchers and patient organization representatives to discuss current care for patients with Gaucher disease and the direction of future disease management. This year’s GLF will be chaired by Timothy M. Cox, Professor of
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EUPATI is a patient-centered team of 30 organizations, led by the European Patients' Forum, with partners from patient organizations (The European Genetic Alliance, the European AIDS Treatment Group, and EURORDIS), university and not-for-profit organisations expert in patient and public engagement, along with many European pharmaceutical companies. The common goal is to help patient advocates be more educated
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On 20-21st april 2013 patients and doctors from the Balkan countries gathered in Park-hotel “Moskva” Sofia to share their experience with living with a rare disease and the treatment and socialization problems they face at the Second Balkan RD Conference “Better communication – better treatment”.The conference was opened by the Chairman of the National Alliance
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5th – 7th April 2013 in Sarajevo (BiH)This was the biggest meeting of Gaucher and LSD patients in our region ever.There were more than 100 participants:‐ around 25 LSD patients,‐ 18 physicians, nurses and researchers,‐ families and friends of the patients,‐ representatives of the following patient associations:o Rare Disease Association of Bosnia and Herzegovina,o Slovenian
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