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Encuesta sobre la acondroplasia
Hemos diseñado un cuestionario con el objetivo de conocer la población afectada o cercana a la acondroplasia.
El cuestionario es opcional y anónimo. Los datos obtenidos serán usados para cálculos estadísticos y para poder tener una mejor percepción sobre la historia natural de la acondroplasia.
Por favor, considere e intente responder. Si usted desea responder a las preguntas más tarde, puede presionar el botón en la parte superior "Inscribirse en BA"

Survey: Limb Lengthening in People with Achondroplasia

2024-03-21Research
This survey was developed by clinicians and representatives of organizations for people with achondroplasia and its objective is to understand the choices and experiences of people with achondroplasia regarding limb lengthening.

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.

What adolescents and young adults think about medicines for achondroplasia?

2023-03-29Research
A new study is going to take place in the USA to collect the perspectives of adolescents and young adults with achondroplasia about medicine options and choices for achondroplasia.
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