OIFE

OI-volunteers in Vietnam

February 7th OIFE had the pleasure to meet (online) the founder of a Vietnamese organization for rare diseases (VORD), which focuses (at the moment) on OI, SMA and Duchenne. Their co-founder Ly Ngo has OI herself and they have a lot of collaboration with scientists and other stakeholders. You can find them online on: https://www.rarediseases.vn/

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RESEARCH

WEBINAR ON FUNDING OPPORTUNITY

December 15th OIFE was represented at a webinar organized by the European Joint Programme on Rare Diseases (EJP RD) together with several OI professionals. The webinar was about their new call focused on “Natural History Studies addressing unmet needs in Rare Diseases”. If you know about researchers who would be interested in collaborating on an…

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MEMBERS

Ukraine – Before and After

Three times our life was divided into “Before” and “After”… Written by Lyubov Petrova, mother of a daughter with OI & chair of the Ukranian OI-organization.  The Diagnosis First it was my daughter’s diagnosis with Osteogenesis Imperfecta (OI)… “Before” was joy of the birth of a long-awaited beautiful baby-daughter, registration to the best kindergarden in…

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ADVOCACY

OIFE at Council of Federations meeting

November 9th and 10th OIFE was represented by Ingunn Westerheim at the Council of Federations (CEF) meeting of EURORDIS – the European umbrella organization for rare conditions. The socalled CEF is a forum where umbrella organizations and federations for rare conditions in Europe come together to learn about news in the European rare disease field…

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EDUCATIONAL

Why measure quality of life and how?

On September 30th representatives from the OIFE attended a very informative webinar, which explored how the importance of Quality of Life measures is expanding, and the ways patient groups can contribute to the development of disease specific measures. The webinar was organized by the foundation Findacure and the company HealX  and explored the ways to…

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ADVOCACY

Tell Ursula about OI!

Tell Ursula von der Leyen, the President of the European Commission, YOUR reason why Europe needs to take action for a better future for people living with a rare disease by 2030. It’s important that people with OI are also represented in this important campaign document, asking for a new European action plan for rare…

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ADVOCACY

The IMPACT Survey is live – spread the word!

The IMPACT Survey is a joint initiative between the umbrella organization Osteogenesis Imperfecta Federation Europe (OIFE), the OI Foundation & the pharma company Mereo BioPharma. Together we’re delighted to announce that English version of The IMPACT Survey is now live and will be running until 10th September 2021. Next week we will also launch the survey…

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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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