PARIS, 13-Dec-2017 — /EuropaWire/ — EURORDIS and its over 700 member patient organisations have launched a new position paper calling for urgent change to ensure patients’ full and fast access to rare disease therapies in Europe. The ‘Breaking the Access Deadlock to … Read the full press release
BRUSSELS, 24-11-2015 — /EuropaWire/ — EURORDIS will be the voice of people living with a rare disease across Europe in the new INNOVCare project. INNOVCare (Innovative Patient-Centred Approach for Social Care Provision to Complex Conditions) addresses the social challenges faced … Read the full press release
Posted in Belgium, European Union, Healthcare, Society
Tagged EURORDIS, INNOVCare project, rare disease
ADAPT SMART PARIS, 30-9-2015 — /EuropaWire/ — EURORDIS is partnering in the recently launchedADAPT SMART* project, which will establish a platform that enables the coordination of Medicines Adaptive Pathways to Patients (MAPPs) activities. MAPPs can help to ensure access to … Read the full press release
Posted in Belgium, Healthcare, Technology
Tagged ADAPT SMART project, EURORDIS, Medicines Adaptive Pathways to Patients (MAPPs)
BRUSSELS, 18-3-2015 — /EuropaWire/ — The 22nd meeting of the EURORDIS Round Table of Companies recently took place in Brussels on the occasion of Rare Disease Day 2015 and focused on the theme ‘Rare Diseases: Going Global’. This EURORDIS corporate-membership group … Read the full press release
PARIS, 12-2-2015 — /EuropaWire/ — To mark Rare Disease Day 2015, EURORDIS is holding a ‘Rare but Real: Talking Rare Diseases’discussion event, which will include contributions from patient representatives who have had a game-changing influence on policy and relevant decision … Read the full press release
PARIS, 29-10-2014 — /EuropaWire/ — ExPRESS 2015 is the name of the exciting new programme for the upcoming annual EURORDIS Summer School. ExPRESS, which stands for Expert Patients and Researchers EURORDIS Summer School, will gather for the first time both … Read the full press release
Posted in Education, France, Healthcare, Spain
Tagged EURORDIS, EURORDIS ExPRESS 2015, Louise Taylor, summer school
The Therapies Scientific Committee recommendations PARIS, 25-6-2014 — /EuropaWire/ — The International Rare Diseases Research Consortium (IRDiRC) Therapies Scientific Committee (TSC) is developing recommendations to guide the policies and funding strategies that will foster the IRDiRC goal of developing 200 new … Read the full press release
Paris, France, 28-2-2014 — /EuropaWire/ — Today is our day. 28 February 2014. Rare Disease Day 2014. Let the world know! There are many ways you can share the news that Rare Disease Day is TODAY! A multitude of activities and events are already … Read the full press release
Posted in France, Healthcare, Society
Tagged auction in Canada, better care, EURORDIS, Fun Play Day in Lebanon, informational awareness-raising campaign in Paraguay, Louise Taylor, march in Austria, photo exhibit in China, Rare Disease Day 2014, rare diseases, seminar in India, television interview in Kenya
Company is pleased to host second international conference dedicated to the research of rare and orphan diseases Novartis is engaging in public dialogue to help raise greater awareness of rare diseases and support for patients Company celebrates more than 50 … Read the full press release
Posted in Healthcare, Pharma & Biotech, Science, Society, Switzerland
Tagged 2nd international conference of research of rare and orphan diseases, 6000 rare diseases, Ciba, Desferal®, Dr. Mark Fishman, EURORDIS, National Organization for Rare Disorders, Novartis, orphan diseases, Rare Disease Day, rare diseases, rare diseases area, rare hemopathies, RE(ACT) Congress 2014
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