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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"

This is the largest and most diverse international meeting in the field of bone, mineral, and musculoskeletal research, gathering more than 2,500 participants from over 50 countries. The program will include around 100 educational sessions and nearly 1,000 poster presentations over four days, covering a wide range of advances in basic, translational, and clinical research.

Among the highlights is the ASBMR/RBDA Pre-Meeting Symposium on Rare Bone Diseases: From the Genome to the Lived Experience, scheduled for Thursday, September 4, 2025, also at the Seattle Convention Center. This symposium will explore how scientific discoveries connect with the lived experience of people with rare bone diseases, creating opportunities for dialogue between researchers, clinicians, and patient representatives.

Inês Alves — President of the Board of ANDO Portugal, founder of Beyond Achondroplasia, and member of the European Rare Bone Forum (ERBF) — played a key role in co-authoring the abstract, supporting its submission, and contributing to the preparation of a scientific poster to be presented by Catherine Nester (ERBF, Biomarin). The poster will explore the challenges faced in rare bone research and propose ways to overcome them, while ensuring that the voices and perspectives of people living with achondroplasia and other rare skeletal conditions are represented in this global scientific forum.


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