On April 11th, Ingunn Westerheim and Alessandra Tolaccia represented OIFE at the Annual Summit of the European Society of Association Executives (ESAE) in Brussels. ESAE fosters the professionalisation of Association management through peer-to-peer knowledge sharing and collaboration. As part of the Community, Association professionals learn from one another, gain a thorough knowledge of the sector, overcome…
From March 5-7, OIFE board member Alessandra Tolaccia was representing OIFE at the Re(Act) Congress in Brussels, Belgium. The congress covers different topics related to rare conditions including newborn screening, data sharing, advanced therapies and impacts of rare conditions on patients, families, and society. You can see the full program here. Organisers stressed that strong…
OI impacts much more in our lives than just the direct health related aspects. OI can cause temporary or permanent mobility issues. These disabilities can create other challenges like inaccessibility, lack of independent living support, economic and social problems as well as discrimination and ableism. OIFE’s volunteers are therefore also engaged in advocacy on other…
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…
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?…
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…
On November 8th Céu Barreiros (treasurer) represented OIFE at the Council of Federations-meeting in Brussels hosted by EURORDIS. The Council of European Rare Disease Federations (CEF) provides a platform for the exchange of experiences and information across federations working for different diseases or group of diseases. The council also allow federations to work together on…
