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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"


rbd summit

The Rare Bone Disease Summit 2021 (December 6 and 14) is the first edition of a global multi-stakeholder group meeting that aims to provide a platform to enable contributors working in the rare bone disease field (patient organisations, experts, pharmaceutical industry, and scientific and medical societies) to collaborate towards improving the lives of people living with these conditions.


Visit the Summit’s website here.



Meeting Objectives

  • Provide a platform to build a robust and valuable annual program to enable stakeholders working in the area of rare bone disease to collaborate towards improving the lives of patients living with RBDs
  • Discuss the patient experience and the impact of RBDs on patients and caregivers
  • Highlight the bottlenecks in the patient journey (diagnosis, care pathways) and advance knowledge, awareness and communication about RBDs
  • Facilitate dialogue between stakeholders to exchange ideas that drive tangible outputs and provide a synergistic action plan for 2022 and beyond.


Agenda

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