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Survey about achondroplasia
We have designed a questionnaire with the purpose to better know the population connected to achondroplasia.
The questionnaire is optional and anonymous. The data obtained will be used for statistical purposes and to better understand the natural history of achondroplasia. Please consider answering.
If you would like to take the survey later, you can click on the link at the top "Register at BA"

Listen to the ASBMR 2021 Rare Bone Disease Podcast

The ASBMR — The American Society for Bone and Mineral Research — 2021 Annual Meeting Podcasts on Rare Bone Diseases are available for listening.

Quality of life in adults with achondroplasia in the US

Study on quality of life and Psychiatric illness in adults with achondroplasia in the US The Kathryn O. and Alan C. Greenberg Center for Skeletal Dysplasias (Hospital for Special Surgery, NY), published a study1 on quality of life (QoL) and diagnosis of psychiatric disorders in a group of adults with achondroplasia in the US. The study consists of the application of 36 questions covering 8 health concepts (see below) and subsequent comparison of the results of thi […]

CLARITY - a Natural History Study of Achondroplasia in the US

The risk of adverse health outcomes in achondroplasia, from cardiovascular diseases, pain, poor function, excess weight, and sleep apnea is unclear. This multicenter retrospective natural history study works as a patient registry and was conducted in the US to understand medical and surgical practices in achondroplasia.

Vosoritide for Achondroplasia - Another step towards commercialisation in the EU

On June 25, 2021, the Committee for Human Medicinal Products (CHMP) of the European Medicines Agency, EMA, recommended the marketing authorisation of Voxzogo (trade name of vosoritide) in the European Union (EU)...
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