Softbones UK

[Brittle Bone Society @BrittleBoneUK]

** 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

[Alexion @AlexionPharma]

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

[Brittle Bone Society @BrittleBoneUK]

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

[Softbones UK @Softbonesuk]

We are very excited to be a part of this.

[Brittle Bone Society @BrittleBoneUK]

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

[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

[Softbones UK @Softbonesuk]

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

[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

[Softbones UK @Softbonesuk]

@ockenden_leon 🙌🙌🙌 amazing

[Softbones UK @Softbonesuk]

Well done Leon this is amazing 💪

[ISCBH @childrensbones]

See you in Dublin!

[European Reference Network on Rare Bone Diseases @ern_bond]

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

[Ingunn Westerheim @ingunn_w]

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!

[Softbones UK @Softbonesuk]

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.

[ECTS @ECTS_soc]

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

[Softbones UK @Softbonesuk]

Great to be at the #ICCBH2019 with over 500 delegates learning about children’s bone health.

[Softbones UK @Softbonesuk]

🕯

[Soft Bones HPP @SoftBonesHPP]

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.

[ISCBH @childrensbones]

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!

[Soft Bones HPP @SoftBonesHPP]

Thank you @davidacohen for helping raise awareness of HPP!

[Softbones UK @Softbonesuk]

@teamlockenden He did it 🙌🙌

[Softbones UK @Softbonesuk]

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 👏👏👏👏😱