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…

READ MORE
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…

READ MORE
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…

READ MORE
Slide showine group Photo of the OIFE boardMEMBERS

OIFE Leadership Meeting

Our annual Leadership meeting for our member organizations took place on February 27th on Zoom. 23 organizations were represented from 21 different countries around the world, which is great. In total we were 48 people attending. The meeting covered news from OIFE, including how and why we work with industry, clinical trials, our Stronger Together…

READ MORE
MEMBERS

Meet OIFE delegate Jesús from Panama

I am Jesús Camilo Osorio Barahona, I am a happy husband, being married to Daysi, a woman that supports me and believes in me.  I am the father of two beautiful daughters, Lluvia and Luna (one of which has OI) and I have OI myself.  I’ve been lucky to have my parents, my wife and my…

READ MORE
MEMBERS

Welcome New OIFE Member CLAN!

Interview with Téa La, Community Development Officer for CLAN (Caring & Living As Neighbours) At OIFE’s Annual General Assembly on June 10th, we were happy to announce that the OIFE Board has accepted the membership application from the NGO CLAN (Caring & Living as Neighbours), to become a supporting member of OIFE. CLAN is an…

READ MORE
MEMBERS

Meet OIFE delegate Isis Atuncar, Peru

My name is Isis Atuncar, I am from Peru, and I was diagnosed with OI when I was born in 1986. I had the opportunity to receive medication and surgical treatment in the USA. That treatment improved my quality of life. When we were back in Peru, my parents and other families together formed the…

READ MORE
Ted Trahan OIFMEMBERS

Meet OIFE delegate Ted Trahan, USA

My name is Ted Trahan. I am married to Sharon, and we have two adult children, Greg and Käthe. Greg has OI and we are excited to share that he is recently engaged to Natalie, who also has OI. I am one of the OIFE delegates of the associate member organization OIF in the USA.…

READ MORE
MEMBERS

New OIFE Member CLAN

At OIFE’s Annual General Assembly on June 10th, we were happy to announce that the OIFE Board has accepted the membership application from the NGO CLAN (Caring & Living as Neighbours), to become a supporting member of OIFE. CLAN is an Australian-based, not-for-profit, non-governmental organisation (NGO). Who is CLAN? CLAN was founded in 2004 and…

READ MORE
Translate »