Today marks the launch of the OIFE awareness campaign connected to Rare Disease Day which takes place on the last day of February each year. What is Rare Disease Day? The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on people’s…
We need your help! OIFE and EURORDIS need your opinion on future policy for people with OI and other rare diseases! If enough people with OI worldwide provide an answer to this survey, it will help us shape the future of rare disease policies regarding access to health care, medical and social research and diagnosis…
One or two times a year, members of OIFE’s Executive Committee attend the Council of European Rare Disease Federations (CEF) in EURORDIS. On November 26th and 27th Ingunn and Bruno attended the Zoom-meeting, where more than 90 people from all over Europe took part. Topics included Rare Disease Week 2021, ERNs, Access to therapies, EU…
Are you interested in research & policy work? As a European umbrella organization, we are more and more often asked to recruit patient representatives for research projects related to OI. This includes both clinical research and basic research. OIFE therefore needs to recruit and educate more people who can represent the voices of people with…
OIFE is looking for someone who could represent us at the Brussels Rare Disease Week 2021. Would you like to apply for the position as our representative? When? Brussels Rare Disease Week (RDW) will take place during the week of 22 February 2021 in Brussels, organized in the lead-up to Rare Disease Day 2021 (28 February). What?…
EuRR-Bone is launched! The registry EuRR-Bone was launched this week, and will cover rare bone and mineral conditions the European Reference Network on Rare Endocrine Conditions (Endo-ERN) as well as the European Reference Network on Rare Bone Disorders (ERN BOND). EuRR-Bone will be of service to all patients, health care professionals and researchers involved in the care…
Today OIFE’s Communication Manager Anna Rossi attended EURORDIS Digital School, which takes place online this year. She has signed up for the entire Digital School 2020, which consists of webinars and eLearning and aims to empower rare disease patient advocates to use digital communication tools to improve the strategic outreach and community-building capacities of their…
On May 14th and 15th OIFE was well represented at the online European Conference on Rare Diseases (ECRD) with 5 representatives, including OIFE president and OIFE Youth Coordinator. In addition 3 people from the OIFE-community attended the event on behalf of other stakeholders. The ERCD conference was originally planned to take place in Stockholm. 1,500…
The Rare2030 – Foresight in Rare Disease Policy is a foresight study that gathers the input of a large group of patients, practitioners and key opinion leaders to propose policy recommendations that will lead us to improved policy and a better future for people living with a rare disease in Europe. Rare2030 is a two…
