Survey: Limb Lengthening in People with Achondroplasia
Survey: Limb Lengthening in people with Achondroplasia - Choices and experiences
This survey was developed jointly by experienced clinicians and representatives of organizations for people with achondroplasia. It is an initiative supported by the European Reference Network for rare bone diseases - ERN BOND and its objective is to understand the choices and experiences of people with achondroplasia regarding limb lengthening.
The survey is available in several languages, including English, Portuguese, Polish, Spanish, Italian, German and French. Be part of it!
If you have achondroplasia and are 12 years of age or older, or you are a parent/caregiver of a child with achondroplasia under the age of 12 years, please complete this survey until the 10th June 2024.
The results of this survey will be presented at the International Achondroplasia Workshop "Long bone pathology in children with Achondroplasia" which will take place within the scope of the 11th International Conference on Children's Bone Health - ICCBH, an event scheduled for June 22 to 25, 2024 in Salzburg, Austria.
An open access report will also be made available online.
Information: the survey is anonymous and no personal data will be shared. Thank you for participating. If you have any questions, please contact Este endereço de email está protegido contra piratas. Necessita ativar o JavaScript para o visualizar.
