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Опрос об ахондроплазии
Мы разработали вопросник с целью лучше узнать о людях, связанных с ахондроплазией.
Этот вопросник является необязательным и анонимным.
Полученные данные будут использоваться для статистических целей и лучшего понимания естественного развития ахондроплазии. Пожалуйста, обдумайте ответы.

Если вы хотите принять участие в опросе позже, вы можете нажать на ссылку в верхней части «Регистрация».

Voxzogo results for achondroplasia and other growth-related conditions

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

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

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

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

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

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.
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