On May 13th OIFE president Ingunn represented OIFE at the Annual General Meeting of EURORDIS – European Rare Diseases Organisation on Zoom, which was scheduled to take place in Stockholm followed by the ECRD-conference. We approved reports and voted for future plans, which includes many important initiatives, that will affect the lives and situations of…
Are you affected by a rare disease or a caring for someone affected by a rare disease? Then we strongly encourage you to share your experience on how the #COVID19 pandemic is having an impact on your life by completing this survey. The survey is developed by the rare disease umbrella EURORDIS – European Rare Diseases Organisation…
The rare disease community raises alert over discrimination in #CriticalCare guidelines during COVID-19 pandemic. Read the statement from EURORDIS to see proposals for healthcare practitioners on how to avoid discrimination against people living with a rare disease and provide optimal care during #COVID19 OIFE supports EURORDIS in their view that critical care guidelines must be non-discriminatory and should be…
EURORDIS launched Winter School with the aim of deepening patient representatives’ understanding of how pre-clinical research translates into real benefits for rare disease patients. The training equips participants with knowledge and skills so they are empowered to effectively participate in discussions with the researchers, policy makers and companies responsible for research or research infrastructures. The 2nd edition…
The European Medicines Agency (EMA) was founded in 1995, and since then has worked across the EU and globally to protect public and animal health by assessing medicines and by providing independent, science based information on medicines. In 2000, patient representatives joined for the first time as members of one of EMA’s scientific committees. Today,…
EURORDIS ’Reframe Rare’ Policy Event On February 18th at the European Parliament EURORDIS – European Rare Diseases Organisation was relaunching the Network of Parliamentary Advocates for Rare Diseases, made up members of parliament (MEPs) advocating to improve the lives of the 30 million people with rare diseases in Europe. The EURORDIS ’Reframe Rare’ Policy Event…
On February 19th 2020 OIFE was again represented at an EURORDIS event in Brussels. Vice President Dace Liepina participated at the 29th EURORDIS Round Table of Companies Workshop “How to teach an old medicine new tricks – The importance of repurposing medicines for patients”. The meeting is primarily for pharma companies, but also open for…
Dear friends & contacts of OIFE. It’s Christmas Eve in Switzerland and I’m taking a moment before family dinner to look back on the year that has passed. To be honest it has been 12 months of ups and downs in the OIFE. To start with the saddest part, it has been a challenging and…
The Rare2030 Panel of Experts (nearly 200 key opinion leaders in rare disease policy) met in person for the first time in Brussels on November 7th to discuss trends in rare disease diagnostics, treatment, care and social support and how they may lead to future policy scenarios. Rebecca Tvedt Skarberg (ePAG in ERN BOND suggested…
