Esta página de web usa cookies. Aceita o uso de cookies externos? Sim Não Saber mais x
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"

Voxzogo results for achondroplasia and other growth-related conditions

2024-05-08Research
BioMarin presented results of annualized growth velocity in children with achondroplasia who started treatment during adolescence with VOXZOGO. 

Limb Lengthening in Achondroplasia: Considerations and Experiences

2024-03-21Research
What do you think about Limb lengthening in achondroplasia? If you have not considered it, not done it, or you have, please share your opinion.

TYRA-300 Heading to Clinical Trial in 2024

2023-12-06Research
The investigational drug TYRA-300 demonstrated significant increases in growth and bone length in a mouse model of FGFR3-Related Skeletal Dysplasia on recent study and is now closer to a Phase Clinical Trial.

Movement Patterns Research Study

2023-08-08Research
Take part in this research study that focus on movement patterns! If you accept to participate, you will be asked to fill in a questionnaire and to walk for 15 minutes carrying your mobile phone and using a specific app for movement analysis that will record your movement data while walking.

Research Opportunity | Independence & Skeletal Dysplasia

2023-07-18Research
Young adults (18-25 years) with a skeletal dysplasia diagnosis and short stature are invited to participate in this research study that aims to understand what independence means to you, and to understand your priorities in terms of independence.

Improving care pathways for people living with rare bone diseases

2023-06-14Research
During the Rare Bone Disease Summit — which took place in December 2021 — key aspects were discussed and proposals to overcome the challenges and improve the lives of people living with RBDs were presented. This recently published article provides an overview of the key points from this meeting.
Para ver este site precisa do Internet Explorer 8 (ou uma versão mais recente)
ou outro browser.


Obrigado.