Rare Bone Disease Summit 2021
The Rare Bone Disease Summit 2021 aims to collaborate towards improving the lives of people living with rare bone conditions.
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Patients’ priorities and expectations on an EU registry for rare bone and mineral conditions
A recently published study entitled Patients’ priorities and expectations on an EU registry for rare bone and mineral conditions(1), with the participation of Inês Alves from ANDO Portugal (Patient Group Representative of the European Rare Bone Forum), highlights the importance of understanding the natural history of rare bone and mineral conditions to improve clinical practice
The CALL TO ACTION project
The European Rare Bone Forum, requested a proposal from Costello Medical to assist in a call to action to shorten the time between research and clinical care.
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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.
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European Rare Bone Forum General Meeting
The European Rare Bone Forum General Meeting will take place on June 24th. To attend please register here…
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ERBF Featured on RARE Revolution Magazine
We are happy to share the RARE Revolution Magazine latest issue where the European Rare Bone Forum (ERBF) is featured in an interview with one of our founders, Inês Alves.
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Rare Conversations #3 – Research in Rare Disease
The third episode of Alexion’s Rare Conversations event series, in cooperation with BPI, will be a forum to discuss specificities and needs of research in rare diseases. Indeed, research and development of new treatments in rare and ultra-rare diseases faces its own challenges, due to missing knowledge of the disease, small patient population, difficulties to
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Check out our new Website: rarebone.org
In 2018, ECTS envisioned the creation of a European Multi-Stakeholder Network for Rare Bone Diseases with the goal to provide a platform where representatives from research, medical and patient communities can meet, learn from each other, and review key topics in the field of rare bone diseases. One year later the European Rare Bone Forum (ERBF) was
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Paving new roads in Rare Bone Conditions Research
On Thursday February 18th, 16h, watch the European Rare Bone Forum Webinar on Rare Bone Conditions Research, with speaker Elvire Gouze (Innoskel Founder & CEO). This event has the support of the European Calcified Tissue Society (ECTS).
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QoL Studies in Rare Bone Diseases: why, who & how?
Please join us on Thursday October 29, 2020 15h CET. Julia Quitmann (University Medical Center, Hamburg – Eppendorf) will be our Speaker addressing Quality of Life Studies in Rare Bone Diseases: why, who and how? This Webinar has the support of the European Calcified Tissue Society (ECTS).
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