** 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: https://t.co/VhuiEASxiO
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
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
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 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!
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 👏👏👏👏😱