Research Opportunity: Open to all adolescents (ages 8 to 22) with achondroplasia
Beyond Achondroplasia
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1y ago
A research team at Baylor College of Medicine and Texas Children’s Hospital in the United States is conducting a research study that you may be eligible for ..read more
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Research study dedicated to adults with achondroplasia
Beyond Achondroplasia
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1y ago
Inês Alves, ANDO Portugal founder, is leading a doctoral research program by Évora University on "Physical, Biomechanical, Nutritional and Psychological Characterization of adults with Achondroplasia, associated to physical activity, exercise and sports". This is an academic study supported by ANDO Portugal - National Organization for Skeletal Dysplasia ..read more
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Parent and HCP Surveys on Clinical Challenges in Managing Achondroplasia in Infancy and Childhood
Beyond Achondroplasia
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1y ago
Ahead of the upcoming workshop on 27th October 2022, 16:30 CET, Clinical Management Challenges in Infants and Young Children with Achondroplasia, EAF is undertaking two surveys to establish the challenges of managing achondroplasia in these age groups: one for parents of children with achondroplasia and one for clinicians ..read more
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Advantages and Disadvantages of Different Treatment Methods in Achondroplasia
Beyond Achondroplasia
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2y ago
This recent article presents the current and potential pharmacological treatments for achondroplasia, highlighting the advantages and disadvantages of all the drugs that have been demonstrated in human and animal studies in different stages of clinical trials ..read more
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FDA approves 1st drug to improve growth in children with achondroplasia
Beyond Achondroplasia
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2y ago
On 19 November 2021, the U.S. Food and Drug Administration (FDA) approved Voxzogo (vosoritide), developed by BioMarin, for children with achondroplasia from the age of five, when children still have growth potential as their growth plates (epiphyses) are open ..read more
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Listen to the ASBMR 2021 Rare Bone Disease Podcast
Beyond Achondroplasia
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2y ago
The ASBMR — The American Society for Bone and Mineral Research — 2021 Annual Meeting Podcasts on Rare Bone Diseases are available for listening ..read more
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Quality of life in adults with achondroplasia in the US
Beyond Achondroplasia
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2y ago
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 this health survey to adults with achondroplasia with data from the general population.   1. Phys ..read more
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Advantages and Disadvantages of Different Treatment Methods in Achondroplasia
Beyond Achondroplasia
by
2y ago
This recent article presents the current and potential pharmacological treatments for achondroplasia, highlighting the advantages and disadvantages of all the drugs that have been demonstrated in human and animal studies in different stages of clinical trials ..read more
Visit website
BioMarin - Achondroplasia Clinical Development Programme Update - June 2021
Beyond Achondroplasia
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2y ago
..read more
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FDA approves 1st drug to improve growth in children with achondroplasia
Beyond Achondroplasia
by
2y ago
On 19 November 2021, the U.S. Food and Drug Administration (FDA) approved Voxzogo (vosoritide), developed by BioMarin, for children with achondroplasia from the age of five, when children still have growth potential as their growth plates (epiphyses) are open ..read more
Visit website

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