YOUTH

OIFE youth meeting 2024 – Extended deadline!

Join us for an unforgettable experience at the Youth Weekend in Eidene, Norway, from September 12th to 15th, 2024! Organized by OIFE and NFOI, this event is for youth with OI from every European country, aged 18 to 32. Spaces are limited, so be sure to secure your spot early! You can register here. Registration…

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ADVOCACY

The IMPACT Survey has a new home!

Launched in time for Wishbone Day 2024, the new IMPACT Survey website helps to raise awareness of osteogenesis imperfecta by capturing the lived experience of the condition, as told by people with OI, their caregivers and close relatives. On the IMPACT Survey website, you will be able to find out more about this landmark survey and…

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EVENTS

Join us on May 6th for Wishbone Day!

This year, we’re launching #Together4OI as a hashtag to celebrate Wishbone Day – the international awareness day for OI. Read more about how it all started here. With #Together4OI we are shining a light on the incredible work that the OI-organizations are doing on national level and what value they bring to people with OI.…

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Male Person with dark hair and light blue Shirt giving a talkRESEARCH

New PhD: Chronic pain in adults with OI

New PhD in OI: Experience of Chronic pain in adults with OI Interview with Rubén Muñoz Cortés My name is Rubén Muñoz Cortés and I work as a psychologist at Fundación AHUCE. I am specialized in clinical psychology, and my primary role involves offering psychological therapy to individuals with osteogenesis imperfecta (OI) or other dysplasias,…

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Flyer describing conferenceEVENTS

OI Conference in Bologna

Would you be interested in attending a conference about patient engagement in OI research in Bologna, Italy? The conference takes place on June 13th 2024. It is organized by the consortium Remedi4All in collaboration with OIFE, As.It.OI (Italian OI-association), ERN BOND (European Reference Network on Rare Bone Diseases) and EURORDIS (Rare Diseases Europe). Tickets are…

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MEDICAL

Care pathways & Adult OI Networks in the UK

Written by Patricia Osborne CEO of Brittle Bone Society and Professor Kassim Javaid When adults with rare bone conditions turn 18 they mostly have no dedicated adult clinics or services to transition to. Because of an initiative from the BBS, there is now an official Rare disease collaborative network (RDCNs) established for adults with different rare…

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MEDICAL

Newborn Screening Programme in UK

Interview with Meena Balasubramanian My name is Meena Balasubramanian. I am a clinician-scientist specialising in bone genetics at the University of Sheffield and Sheffield Children’s Hospital in the UK. I have worked in Sheffield over the last 15 years. I started here as a Clinical Genetics trainee having previously worked as a paediatrician and did my…

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Group of People with yellow shirtsMEMBERS

New OIFE Member Brazil (ANOI)

Information provided by Henrique Benincaza dos Santos, Associação Nacional de Osteogenese Imperfeita (ANOI) How many people with OI does Brazil have? The exact number is unknown; we have an estimate of around 14 thousand people living with osteogenesis imperfecta in Brazil. Tell us about the situation for OI-people in Brazil! In Brazil, we have 15…

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CONFERENCES

RareX Conference in South Africa

By Rageema Livingstone, President of the South African OI-association (Associate OIFE member) For four days, Johannesburg pulsed with the collective energy of hope and collaboration as RareX unfolded, hosted by Rare Diseases South Africa (RDSA). This pivotal event, held from February 14th to 17th, 2024, brought together a diverse tapestry of voices – patient groups, healthcare…

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