STORIES

Athletes without Permission

Our Polish delegate Aneta is planning to write an eBook about good examples from people with OI living in Europe who are physically active in different ways. Aneta herself has OI type IV and has tried many different sports and activities: swimming, scuba diving, crossfit and climbing. The project has the working title “Athletes without…

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RESEARCH

Breathe, Eat, Sleep & Test!

OIers are frequently recommended to lose weight, but no indications or information on the nutritional status in OI are provided. Patients and families, therefore, end up with following a “do-it-yourself” diet, sometimes eating a lot of dairy products with the wrong idea to strengthen the bones and reduce the fractures incidence. Interview with Antonella Lo…

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MEDICAL

OI Variant database

WHAT IS THE OI VARIANT DATABASE? Professor Raymond Dalgleish moved to the University of Leicester in January 1984 and set up a group to study the genetics of OI and vascular EDS. Since 1984 he has on a volunteer basis been systematically collecting all publications describing OI-causing sequence variants (mutations). At first the database was…

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MEDICAL

The IMPACT Survey

The IMPACT Survey is a joint initiative between OIFE, OIF & Mereo BioPharma. The survey will be launched in summer 2021 and we will need the help of all our member organizations and the OI-community to spread the word and encourage as many people with OI (and parents) to fill in the survey.  Written by…

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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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EDITORIALS

Enough is Enough! Speech from Rare2030

This text was originally given as a keynote speech by Rebecca Tvedt Skarberg at the Rare2030 conference in February 2020. It was later published as the editorial in OIFE-Magazine 1-2020.  “It has been a great honour to be a part of Rare2030. Building tomorrow’s roadmap for rare diseases is a project close to my heart, simply…

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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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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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