Softbones UK 已转推
** 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
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Softbones UK 已转推
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 已转推
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 已转推
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 已转推
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 已转推
Softbones UK 已转推
The first meeting of the Rare Bone Network: BOND ERN has given its active contribution! #ERNBOND #RareBoneNetwork #rarebonediseases
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Softbones UK 已转推
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 已转推
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 已转推
Softbones UK 已转推
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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