EURORDIS

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 →

LONDON, 01-Dec-2017 — /EuropaWire/ — On December 5-6, 2017, 200 high-level experts from government, academia, biopharmaceutical developers and patient organisations convene in London (UK) to address the mounting challenge of accessibility and patient access to high-value, high-cost medical therapies. The … 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 →

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 →

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 →

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 →

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 →

Paris, France, 4-3-2013 — /europawire.eu/ — Sanofi (EURONEXT: SAN and NYSE: SNY) and its subsidiary Genzyme announced today that Genzyme has received a Company Award from EURORDIS, the largest European patient organization in the field of rare diseases. The EURORDIS Company Award … Read the full press release →