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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!
Well deserved dinner with the team after a great 1st day at @childrensbones Looking forward to more exciting news and networking tomorrow! #xlhawareness #ICCBH2019
Meet the founding members of our International #XLH Alliance! We are committed to improving outcomes for patients and families impacted by #XLH and related disorders. Visit our website for more information:xlhalliance.org
THANKS @ScotParl @NicolaSturgeon @ShonaRobison not just 50th Awards for care, research, philantrhopy . . . #OstegenesisImperfecta we are building bridges with @XLH_Network & @Softbonesuk & @FDSSUK @JoeFitzSNP @AnnieWellsMSP @SheffChildrens @EdinburghUni @dundeeuni @Craigie_High
We've recommended burosumab as an option for treating X-linked hypophosphataemia in children and young people. Find out more here: bit.ly/2Q2eyhQ
Excellent news for our field: NICE Backs Crysvita® (Burosumab) for Rare Metabolic Bone Disorder, X-linked Hypophosphataemia #XLH #Kyowakirin #rarebonediseases #rarediseases prn.to/2CiWT2F
It took us a few seconds to notice a student's 'alternative' binding of this literary classic... 😆
@LindAlliance survey for patients/carers and professionals affected by XLH, OI, Fibrous Dysplasia or McCune Albright boneresearchsociety.org/news/#37
UK experts in Paris for update of XLH management before international meeting. Lots of new ideas; watch this space!
@radioheadnews Had to share amazing new #radiohead prints by @sebastianedge Abingdon, 2011 buff.ly/1OZuhM3
Amazing turnout at the #BRI picket for the #JuniorDoctorsStrike + loads of support from the public despite the press
.@XLH_Network: voice of patients w/ x-linked hypophosphatemia-metabolic bone disorder:weak bones,short stature&severe chronic pain #NIHChat
Lovely to meet you today! Good luck #MacTakeover @Noriko_Homma @HavasPeople @senorescabon
One more day until #GivingTuesday! Please consider giving to the #XLHNetwork tomorrow.
Here I am with the mighty Murtagh, #DuncanLaCroix crossing the finish line on the 45km @thekiltwalk eating a pain sandwich. #wellworthit
Govt sold off OUR Royal Mail. Now it's selling off OUR NHS. Join the FIGHTBACK with NHA Party.
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