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.

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.

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.

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.

The pharmaceutical company Pfizer has recently decided to discontinue development of the drug Recifercept for the treatment of achondroplasia. 

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.