Softbones UK retweetet
** Brittle Bone Society Medical Advisory Board Q&A Session on Covid19 - 9th April @ 3PM ** If you have something you want to ask, submit it here: form.jotform.com/200923088301043
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Softbones UK
27 posts
Softbones UK retweetet
People living with rare and devastating diseases are our inspiration and our Guiding Star. Hear from our employees how patients inspire their work every day. #RareDiseaseDay
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Softbones UK retweetet
Leaders of rare bone groups met today to look at how we can share expertise. With an update by the new rare bone nurses forum
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Softbones UK retweetet
Learning from experience: Rare Bone Disease associations working together at #BBS19 to share knowledge & expertise on rare bone diseases & foster support for Adult Rare Bone Disease treatment pathway in the UK @BrittleBoneUK @Softbonesuk @FDSSUK @RGAUK @UkXlh
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Thank you to the #BBS for inviting us to be a part of this. It is vital to have a collaborative approach to ensure better care pathways and treatment for those affected by rare bone disease. #strengthinnumbers
Brittle Bone Society@BrittleBoneUK
Great to also have @ingunn_w @OIFE_OI update all UK bone groups on Euorpean rare bone networking and medics @Stu_Ralston @JavaidKassim #BBS2019 sponsored by Alexion
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Softbones UK retweetet
Great to also have @ingunn_w @OIFE_OI update all UK bone groups on Euorpean rare bone networking and medics @Stu_Ralston @JavaidKassim #BBS2019 sponsored by Alexion
Mereo BioPharma@MereoBioPharma
Learning from experience: Rare Bone Disease associations working together at #BBS19 to share knowledge & expertise on rare bone diseases & foster support for Adult Rare Bone Disease treatment pathway in the UK @BrittleBoneUK @Softbonesuk @FDSSUK @RGAUK @UkXlh
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Softbones UK retweetet
Softbones UK retweetet
The first meeting of the Rare Bone Network: BOND ERN has given its active contribution! #ERNBOND #RareBoneNetwork #rarebonediseases
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Softbones UK retweetet
Nice to exchange ideas & experiences with patient representatives from other European rare bone organizations: HPP, XLH, achondroplasia and other skeletal dysplasias. A lot of challenges in common!
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Yesterday @Softbonesuk had the privilege to be involved in a multi-stakeholder meeting to establish a rare bone network. Many thanks to @OIFE_OI @hppgermany @ANDO_Portugal for co-hosting the event and @ECTS_science @childrensbones for supporting the event and making it possible.
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Softbones UK retweetet
We are proud to have hosted and supported the organisation of a #rarebonediseases multistakeholder meeting at #ICCBH2019. #collaboration #education #influence are some of the take home messages that will form the #mission and #vision of the network @ECTS_soc @childrensbones
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Great to be at the #ICCBH2019 with over 500 delegates learning about children’s bone health.
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Softbones UK retweetet
Softbones UK retweetet
Thank you @davidacohen for helping raise awareness of HPP!
David A. Cohen@DavidACohen_MD
10/ If you have a patient with low AlkPhos, consider #hypophosphatasia. In addition to high fracture risk, these patients may also have tooth problems, bone/muscle pain, mobility/gait problems, mental fogginess, & a higher risk of atypical femur fractures.
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Leon Ockenden is currently at the start line of the London Marathon running in aid of Softbones U.K. raising awareness of Hypophosphatasia. 🏃♂️🏃♂️🙌🙌🙌
Go SMASH it Leon Valentine 💪 we will be following you along route 👏👏👏👏😱
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