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** 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
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
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
We are very excited to be a part of this.
Thrilled to announce our FIRST rare bone summit meeting will be January London 2020 with @BrittleBoneUK @XLH_Network @Softbonesuk @RGAUK @FDSSUK guest speaker Specialist Nurse Ian Tucker @UHBristolNHS
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
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
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
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
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
Well done Leon this is amazing 💪
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
See you in Dublin!
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
The first meeting of the Rare Bone Network: BOND ERN has given its active contribution! #ERNBOND #RareBoneNetwork #rarebonediseases
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!
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.
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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We lost an HPP baby last night. In her honor - we light a candle for the family that felt the joy of their firstborn daughter on Friday, celebrated their first Mother's Day yesterday, and lost their daughter tonight. Please say a prayer for this family tonight. We must do more.
Congratulations to all the winners of the ECTS-ICCBH awards at #ECTS2019 - for abstracts submitted on paediatric bone and rare bone diseases - well done everyone!
Thank you @davidacohen for helping raise awareness of HPP!
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.
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 👏👏👏👏😱
One more sleep until the #LondonMarathon2019 😱 @ockenden_leon now has his number. We are so excited for Leon who has now smashed 1k 🙌🙌🙌 Enjoy your rest today we are all behind you 🏃♂️🏃♂️🏃♂️🏃♂️👏👏👏💪💪💪 It’s still not too late to support Leon. justgiving.com/crowdfunding/L…
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