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Questionário sobre acondroplasia
Desenhámos um questionário com o objetivo de conhecer a população ligada à acondroplasia.
O questionário é opcional e anónimo. Os dados obtidos serão usados para cálculos estatísticos e para perceber melhor a história natural da acondroplasia.
Se quiser preencher este questionário mais tarde, basta clicar no link no topo "Registe-se no BA"

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. 

TransConCNP ACcomplisH Trial News and Results

2022-12-14Research
Last month Ascendis Pharma revealed results on the Phase 2 ACcomplisH Trial in children with achondroplasia aged 2-10, showing TransCon CNP's potential to meet patient and caregiver needs for a safe, effective, tolerable, and convenient treatment for this condition.

Research Opportunity: Open to all adolescents (ages 8 to 22) with achondroplasia

2022-11-30Research
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!

Research study dedicated to adults with achondroplasia

2022-11-23Research
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.

Parent and HCP Surveys on Clinical Challenges in Managing Achondroplasia in Infancy and Childhood

2022-09-22Research
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.
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Obrigado.