#softbonesuk - Twitter Hashtag

over 4 years ago

Some doctors only see 1 case of rare disease a year, which is why this year in phase III of the campaign we will be asking them to #FindThe1In17 #RareDiseaseDay #rareconditions #Iamnumber17 #metabolicsupportuk #softbonesuk https://t.co/QymSPeoVUy

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Melanie Williams Fine Art @cysgodycoed1

over 6 years ago

On ‘Rare Disease Day’ I need to share my story of Hypophosphatasia or HPP. https://t.co/QGwBjNOPi4. #hpp #hypophospatasia #softbonesuk #rudystudy #rare #rarediseaseday2020 #metabolicsupport #showyourrare #tellyourstory #iamnumber17

cysgodycoed1's tweet photo. On ‘Rare Disease Day’ I need to share my story of Hypophosphatasia or HPP. https://t.co/QGwBjNOPi4.

#hpp #hypophospatasia #softbonesuk #rudystudy #rare #rarediseaseday2020 #metabolicsupport #showyourrare #tellyourstory #iamnumber17 https://t.co/Twzw3bU7Cl

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HPP Deutschland @hppgermany

over 7 years ago

Networking at the #iccbh2019 with #oife, #softbonesuk and many other stakeholders within the rare bone disease community

Ingunn Westerheim @ingunn_w

over 7 years ago

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!

ingunn_w's tweet photo. 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! https://t.co/MAo79C7yJC

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Soft Bones HPP @SoftBonesHPP

over 7 years ago

Soft Bones UK @ockenden_leon Crossing the winners line in the UK Marathon. All for Soft Bones awareness. I believe he was ranked 3 Celebrity finish... YEAH LEON Ockenden Thank you https://t.co/6pSpIFKT9W #fitness #softbonesuk #running #londonmarathon #fitfam Support Soft Bones UK

SoftBonesHPP's tweet photo. Soft Bones UK @ockenden_leon Crossing the winners line in the UK Marathon. All for Soft Bones awareness. I believe he was ranked 3 Celebrity finish... YEAH LEON Ockenden Thank you https://t.co/6pSpIFKT9W
#fitness #softbonesuk #running #londonmarathon #fitfam
Support Soft Bones UK https://t.co/WZLPtriFQt

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Rudy study @RudyStudy

over 8 years ago

#SoftBonesUK's aids are to raise awareness of #HPP - to determine early diagnosis and to support & advocate those with HPP and their families in the UK. Read more about the support group here: https://t.co/JUsnOQOEsC

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