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Questionário sobre acondroplasia
Desenhámos um questionário com o objetivo de conhecer a população ligada à acondroplasia.
O questionário é opcional e anónimo. Os dados obtidos serão usados para cálculos estatísticos e para perceber melhor a história natural da acondroplasia.
Se quiser preencher este questionário mais tarde, basta clicar no link no topo "Registe-se no 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

rbd sum agenda 1024x563

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Obrigado.