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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».

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.

Physical & Biomechanical Evaluation of Adults with Achondroplasia - Doctoral Research Study

2023-02-23Research
Inês Alves, mother of a 10 years-old girl that has achondroplasia and founder of Beyond Achondroplasia, and ANDO Portugal (The National Association of Skeletal Dysplasias), is conducting a research study included in her PhD project dedicated to people over 18 years-old with achondroplasia.

Pfizer to Discontinue the Development of Recifercept for Achondroplasia

2023-02-06Research
The pharmaceutical company Pfizer has recently decided to discontinue development of the drug Recifercept for the treatment of achondroplasia. 
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