MEMBERS

New MDT OI-Clinic in Ghana

In January 2022 a new multidisciplinary (MDT) clinic for osteogenesis imperfecta was established in Ghana. We did an interview with the initiator and woman behind it – Mrs. Justina Yiadom-Boakye, the president and Founder of OIFE’s associate Member Ghana (OIF Ghana). Who are you and what is your relationship with OI? I am Mrs Justina…

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Sammi hold a ribbon saying Esperanza"STORIES

Artists with OI: Sammi Haney

Interview with Sammi’s Father Matt Haney Sammi loves weird silly toys and takes whatever her current favorite is with her everywhere. She has OI Type III and uses a wheelchair. She has broken hundreds of bones from simple things like turning too much when asleep or sneezing too hard. At the age of 11 she…

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STORIES

Activist with OI: Giorgia Meneghesso

Who are you and what is your relationship to OI? My name is Giorgia Meneghesso, I have type IV OI, with a little bit of overlapping genes with Ehlers Danlos. I am the regional representative of the Italian OI-association (As.it.OI) in Lombardia, and the third OIFE delegate for the Italian OI-organization As.it.OI. What do you…

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Woman practising yoga on a beachMEMBERS

Yoga & OI

“Yoga is a light, which once lit will never dim. The better your practice, the brighter the flame.” B.K.S. Iyengar (Yoga Guru)   What exactly does yoga mean? Can anyone with OI practice yoga, no matter how limited their movement is? And how can yoga help in everyday life? Archana, the President of OIFE’s member…

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STORIES

Artist and activist with OI: Benjamin Mejia

Interview with Benjamin Mejía, artist & activist from El Salvador Who are you and what is your relationship with OI? I am Benjamin Mejía, I am 28 years old and live in the City of San Salvador, Capital of the Republic of El Salvador, Central America; Currently I am a Fourth Year Student of the…

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[Image shows a gouache/ink/pencil cartoon illustration I made in my sketchbook. Against a black background, a yellow orb frames an illustration of me sitting on the floor, crooked white femme with glasses and hair in a messy bun. I look down lovingly at the ghost of kid-me sitting in my lap, and hold the back of her head gently. She looks back at me and holds juniper (fluffy black cat) in her lap. Around the orb is abstract decorative designs of yellow vines, sparkles, and dots.]STORIES

10 tips to parents of children with OI

Unsolicited advice for non-disabled parents of disabled children By Haley Brown, artist from the US Unsolicited parenting advice from someone who isn’t even a parent is…everyone’s favourite thing, right? I know, I know, it can be really rude and annoying. But I wrote this from a place of deep love – for disabled kids AND…

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STORIES

Parenting a child when you have OI

Claudia Finis is a member of the German OI-association DOIG and a volunteer for the OIFE. With the input from two other parents (Janina and Sven) who have OI themselves, she wrote an article about parenting a child when you have OI. The article was first published in the German magazine “Durchbruch” (Breakthrough). It has…

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STORIES

OI athletes at the Paralympics

The Spanish OI-organizations have identified many different athletes with OI who are competing in the ongoing Paralympics in Tokyo. The athletes come from Spain, Greece, The Dominican Republic, USA, Germany, Japan and Great Britain. We wish all the athletes best of luck! Below you can watch the campaign video #WeThe15 which was made to counter…

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STORIES

Artists with OI: Erwin Aljukic

Erwin Aljukic is an actor, dancer, speaker and fashion journalist. Since 1998 he can be seen on TV, in the cinema and at the theater. In addition to acting, he studied fashion journalism and has been working as a freelancer ever since. In 2014 he devoted himself to contemporary dance. Aljukic has been a permanent…

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