European Rare Bone Forum

A patient-led Forum and networking arena between Patient Organisations, Scientific Societies and Industry working in rare bone diseases

[European Rare Bone Forum @RareBoneForum]

The European Rare Bone Forum (#ERBF) will present the poster “Accelerating Research & Development for Rare Bone Conditions in Europe: A Multistakeholder Call-to-Action” at #ASBMR2025 in Seattle.
https://t.co/46rR0yR0Ey

[European Rare Bone Forum @RareBoneForum]

ERBF to Present White Paper @ ESPE-ESE Joint Congress 2025
At 12:40 CET - 11 May, we will present our white paper titled: “Research and Development of Treatments for Rare Bone Conditions in Europe”
https://t.co/pXh9ospPni
#ESPEESE #ERBF #rarebone #rareboneconditions #research

[European Rare Bone Forum @RareBoneForum]

During the RBD Summit 2021 core aspects were discussed to overcome challenges in care and improve the lives of people living with RBDs. This new article provides an overview of the key points from this meeting.
https://t.co/Jzcp5VbvDM

#erbf #rareboneforum #rareboneorg #rarebone

[European Rare Bone Forum @RareBoneForum]

We will be moderating an ECTS-ISCBH workshop in conjunction with the European Rare Bone Forum this afternoon, 2 pm (GMT+1).
https://t.co/6pMBq9sZhM

#ECTS2023 #rarebone #erbf #brs2023 #Liverpool #rareboneorg

[European Rare Bone Forum @RareBoneForum]

Not so Rare! 300 million people (5% of the world population) live with a rare disease. Out of these, more than 2 million live with rare bone conditions.
Know more👉 https://t.co/vhhqPFZAkm
#raredisease #rarediseaseday #rarediseaseday2023 #rarebone #rareboneconditions

[European Rare Bone Forum @RareBoneForum]

📢 The deadline for participation has been extended. You can now participate until February 6, 2023.
The Survey is available in 5 languages:
🇬🇧 🇫🇷 🇩🇪 🇮🇹 🇪🇸
Take part!
https://t.co/P0oSgJIFlg

[European Rare Bone Forum @RareBoneForum]

“How to overcome research barriers on Rare Bone Conditions” will be the main topic of our Sponsored Educational Symposium at the @ECTS_soc Congress 2022 — 8th May | 13.30 | Auditorium 101.
https://t.co/7UI2JcYsi6

[European Rare Bone Forum @RareBoneForum]

The first approved treatment for FOP!
https://t.co/y7Qvd9rsWv
#sohonos #ipsen #fop #erbf #rareboneforum

[European Rare Bone Forum @RareBoneForum]

Are you a patient OR physician with an interest in rare bone, mineral or endocrine conditions? Take the PROMs survey on what are the most important questions to ask about daily experiences and health needs
@RareEndoERN @EuRRBone @ern_bond @ESEndocrinology
https://t.co/Xuc0iJFCyO

[European Rare Bone Forum @RareBoneForum]

The ERBF Call To Action Project kicks off on January 2022. Visit https://t.co/xutjjMSR8g for more information on this project which aims to improve access to treatments for RBDs and influence policies at the national and European level.

[European Rare Bone Forum @RareBoneForum]

The RBD Summit 2021 will aim to collaborate towards improving the lives of people with rare bone conditions. ERBF will take part in this initiative.
#ERBF #RBD2021
https://t.co/lPjyBrdjDI

[European Rare Bone Forum @RareBoneForum]

Forum members sharing highlights on Rare Bone Conditions!
#ASBMR2021

[Inês Alves @InesA_Beyond]

Interesting jo join this series of podcast about research on Rare Bone conditions. And it was a great time brainstorming with #CharleneWaldman selecting abstracts.

[European Rare Bone Forum @RareBoneForum]

Working progressing in a good pace towards having the beta version for rare bone specific modules in the new @EuRRBone, the European Registry for rare bone and mineral conditions, EuRR-Bone

[European Rare Bone Forum @RareBoneForum]

Forum member, Dr. Oliver Semler, presented the highlights of day 2 of #ASMBR2021 in the most eloquent, clear and honest way. Thank you for your important contribution and dedication to Rare Bone Conditions over the years.

[COR2ED @COR2EDMedEd]

New #rarebonedisease podcast available.
Dr Oliver Semler discusses his highlights from Day 2 at #ASBMR2021, sharing his view of the potential impact on clinical practice
#MedEd #bone
Listen to the podcast https://t.co/awlAXbWjl6

[European Rare Bone Forum @RareBoneForum]

Very important work being led by the International XLH Alliance.

[International XLH Alliance @AllianceXlh]

The 2nd recommendation in our International XLH Awareness Campaign relates to genetic testing. The clinical diagnosis of XLH should be confirmed by genetic analysis of the PHEX gene with a further work- up aimed at diagnosing the presence and severity of disease complications...

[European Rare Bone Forum @RareBoneForum]

The IMPACT Survey is live! Take part and help document the impact that #OsteogenesisImperfecta has on people, families, carers & healthcare systems.
Eng version is now live. Next week Spanish, French, German, Dutch, Italian and Russian.
#impactsurveyOI
https://t.co/ACIQJgRtFG

[European Rare Bone Forum @RareBoneForum]

Discover the European Rare Bone Forum on our new website: https://t.co/YpxZDf5I4R

#ERBF
#EuropeanRareBoneForum