Logo of German OI-organization DOIGMEMBERS

Rest in Peace Peter Radtke

And 2020 continue to be a very sad year. We were sad to learn that the founder of the German OI-organization Deutsche OI Gesellschaft – Glasknochen e. V., Mr. Peter Radtke passed away on November 28, 2020 at the age of 77 years. Mr. Radtke was an actor and co-founder of the “Münchner Crüppel-Cabaret”. “I’ve…

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Logo EMA

OIFE at EMA Meeting on orphan drugs

On November 30th OIFE was represented at an interactive meeting about Orphan Drugs hosted by the European Medicines Agency (EMA). Orphan drugs are medicinal products intended for diagnosis, prevention or treatment of rare diseases. There are currently two designated orphan drugs being investigated in OI, the most known being setrusumab from Mereo Biopharma. Products for…

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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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Jenni in fancy vehicle in snowSTORIES

Artists with OI: Jenni-Juulia from Finland

Interview with Jenni-Juulia Wallinheimo-Heimonen Who are you and what do you do and in what way has OI affected your art? I’m a multidisciplinary artist and an activist making political disability arts. My passions are structural violence, aesthetics of assistive devices and issues related to women with disabilities. My background is in textile arts but…

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Logo of IOIF IndiaMEMBERS

New OIFE Member India (IOIF)

Meet our new member – the Indian Osteogenesis Imperfecta Foundation (IOIF) Interview with Archana Ravindra, President IOIF As the president of the Indian Osteogenesis Imperfecta Foundation (IOIF), I am honoured to meet  you all. I am Archana Ravindra from Bangalore, India. I was born with OI and was formally diagnosed at the age of 4…

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OI written 18 times in different colors.RESEARCH

New OI-causing gene (KDELR2) detected

By Dr. Oliver Semler, Paediatrician, OIFE Medical Advisory Board (MAB) A new OI-gene has been detected by a European group of researchers from Germany, UK, The Netherlands and Spain. The new type of OI is inherited in a recessive way. In most individuals with Osteogenesis imperfecta, the disease is inherited in a dominant way and…

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RESEARCH

BOOST2B – stem cell trial in India

Dr. Madhuri’s team starts stem cell therapy in children in India We are pleased to inform you that we have initiated the stem cell therapy for children with Osteogenesis imperfecta under the Indo – Swedish collaboration, funded by DBT, India and VINNOVA, Sweden at Christian Medical College, Vellore. We have treated a patient severely affected…

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Screenshot from workshop on patient involvementCONFERENCES

Successful workshop on patient involvement

On Tuesday 18th of November Ingunn Westerheim (OIFE) & Tracy Hart (OIF) together hosted a workshop about patient involvement in research at the ICCBH Virtual Forum. The workshop had more than 50 participants from Europe, US, Canada and beyond. It included three talks about patient involvement from different perspectives as well as a constructive Q&A…

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Tellef laughing at a beachRESEARCH

BOOSTB4 – stem cell therapy in OI

Interview with Anne Siqveland and Nicolai Wendt (parents of Tellef, 1 year old) Who are you and what is your relationship to OI? We are a Norwegian family of four, Anne (36), Nicolai (34), Edvard (4) and Tellef (1). Tellef was prenatally diagnosed with OI and his multiple fractures and mutation of COL1A2 gene place…

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