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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STORIES

Jeanette Chedda – fighting for diversity!

Through social media we learned that Jeanette Chedda is running for Parliament in the Netherlands. Her main cause is disability politics and fighting for diversity. The elections are coming up in just a few days.  Can you tell us a little bit about yourself? I am Jeanette Chedda (37), I have OI type three. I…

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STORIES

Artist with OI: Pablo Ostarek

The winner takes it all! What a coincidence! Some time ago OIFE had prepared an interview with Pablo Ostarek, an artist with OI, which you can read below. And this week, we congratulate him for winning the 1st prize in the International Rare Disease Film Festival for his short film “This is not a person”!…

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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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OIFE Youth at Rare Disease Week

Did you know that the first Brussels Rare Disease Week starts tomorrow? #RareDiseaseWeek brings together Members of the European Parliament (MEPs) and rare disease patient advocates from across Europe to exchange ideas and ensure fairer and more inclusive policies for people with #rarediseases. OIFE has three young people representing their countries at Rare Disease Week…

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COVID-19 survey for people with OI

As a follow-up to the survey in July 2020, the OI Foundation has created a second survey focused on how the COVID-19 pandemic continues to impact the OI community in the US and worldwide. The OIFE is supporting the project.  Help us know more! Please take a few minutes to complete this new survey today!…

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ADVOCACY

First OIFE Leadership Meeting

The European member organizations of OIFE virtually came together on February 1st to learn about what’s happening in pharmacological research and how the patient organizations in Europe can work nationally and on a European level to improve access to new and potential treatments for OI. In addition to the delegates, leaders from the European OI-organizations…

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ADVOCACY

Guide for parents after diagnosis

Your newborn child is finally here, but when you discover that all is not as it should be, what do you do? – When your child is diagnosed with a rare condition, there are so many things that go through your head. OIFE recommends the publication “Guide for parents after diagnosis”  to parents after they…

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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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