Workshop on Foramen Magnum Stenosis in Children with Achondroplasia - ICCBH
2019-04-15Medicine
Inês Alves, Beyond Achondroplasia and ANDO Portugal founder, is representing the patients and contributing to the rare bone disease section of the 9th International Conference on Children's Bone Health as a member of a working group who organized this event by organizing a pre-meeting workshop.

Pregnancy With Achondroplasia
2018-01-18Medicine
Pregnancy with achondroplasia may be scary: breathing during the third trimester may not be easy, cesarean section is inevitable, and anesthesia can be complicated. However, some of these complications may be minimized. Here we present two case reports of pregnant women with achondroplasia who delivered two healthy babies.
A documentary on the lengthening process
2018-06-05Social
Watch the documentary "The Lucas's Journey", about the limb lengthening process of a boy with achondroplasia here.
Achondroplasia Personal Life Experience Scale (APLES) - A Patient-reported Outcome Instrument for Young People With Achondroplasia
2018-04-02Social
Patient-reported outcomes instruments are questionnaires that assess an individual's perception of his/her Health-Related Quality of Life (HRQoL), which includes their perception of their physical, emotional, mental, and social states. A paper on the development of a questionnaire to assess the HRQoL of people with achondroplasia.
Assessing Health-related Quality of Life (HRQoL) in achondroplasia
2016-12-06Social
Skeletal dysplasias affect multiple organ systems, but how does that influence the way people who have these diseases see themselves and their lives? This paper aims to quantify the quality of life of people with short stature skeletal dysplasias through a survey.

Parents experiences in achondroplasia - a completed research study
2022-03-28Global
The Brod Group, a science-based health outcomes research agency, led a multinational research project on achondroplasia, involving parents of children with achondroplasia living in the USA, UK, Australia or New Zealand. It was finalized on the 31st May 2022.

