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Survey about achondroplasia
We have designed a questionnaire with the purpose to better know the population connected to achondroplasia.
The questionnaire is optional and anonymous. The data obtained will be used for statistical purposes and to better understand the natural history of achondroplasia. Please consider answering.
If you would like to take the survey later, you can click on the link at the top "Register at BA"

erbf symposium ects

The European Rare Bone Forum (ERBF) is a patient-led Forum and networking arena between Patient Organisations, Scientific Societies and Industry working in Rare Bone conditions. Inês Alves, founder of Beyond Achondroplasia, and President of ANDO Portugal is a member of ERBF.

The ECTS Congress is the annual event of the European Calcified Tissue Society (ECTS), the major organisation in Europe for researchers and clinicians working in the musculoskeletal field. that acts as a forum for the dissemination of scientific excellence and education. ECTS represents more than 600 members, including basic researchers, clinicians, students and health allied professionals working in the musculoskeletal field.

ECTS Conference2022 Helsinki LOGO

“How to overcome research barriers on rare bone conditions”
 will be the main topic of the ERBF Sponsored Educational Symposium at the ECTS Congress 2022 — 8th May | 13.30 | Auditorium 101.


Speakers Chair
Inês Alves
ERBF
Natasha Appelman-Dijkstra
Leiden University Medical Center
Nick Bishop
Sheffield Children's Hospital
 
Marwan Sleiman
IPSEN
 



"The whole research process entails various steps and demands collaboration. Researchers, clinicians and patients often encounter multi-level barriers in the development and/or execution process. How to overcome these obstacles is an ongoing challenge. Involving a multi stakeholder group, we will debate on how to overcome them, prioritizing real needs."

For more information, please visit the ECTS website here.



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