ADVOCACY

OIFE at Rare Disease Week

Rare Disease Week (RDW) is a brand new week-long series of events organized by EURORDIS which started February 22nd 2021. It included many webinars that targeted on rare disease patient advocates. The goal was to empower them with knowledge and skills so they can effectively participate in advocative activities at a European level and influence…

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ADVOCACY

Rare 2030 Recommendations

On February 23rd we were at least six people from the OIFE-community represented at the big Rare 2030 conference brilliantly hosted by EURORDIS. The conference had more than 650 participants attending live (online) and even more people following on streaming. The main purpose was to present the recommendations from the Rare2030 foresight study. These were…

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OIFE

Winners of Black Pearl Award 2021

Ingunn Westerheim and Rebecca Tvedt Skarberg from Norway are the recipients of this year’s Black Pearl Volunteer Awards, an international award that recognizes their volunteer efforts for people with the rare condition osteogenesis imperfecta (OI). How it all started We do the interview on Zoom, since both ladies are at risk for Covid19. But what…

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Colorful graphic of six people with rare diseases and logos of OIFE and EURORDISADVOCACY

One month to Rare Disease Day!

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…

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ADVOCACY

RARE2030 – Survey to shape future policy

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…

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ADVOCACY

Council of Federations meeting

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…

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ADVOCACY

OIFE needs patient representatives

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…

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Logo of EURORDISADVOCACY

Brussels Rare Disease Week 2021

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?…

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ADVOCACY

Data strategy for the ERNs

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…

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