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Survey about achondroplasia
We have designed a questionnaire with the purpose to better know the population connected to achondroplasia.
The questionnaire is optional and anonymous. The data obtained will be used for statistical purposes and to better understand the natural history of achondroplasia. Please consider answering.
If you would like to take the survey later, you can click on the link at the top "Register at BA"

Interview study to pilot test a survey on children's and parent's experience with achondroplasia

2020-05-15Global
The Brod Group, a science-based health outcomes research group based in the USA, is conducting an interview study for a new survey on achondroplasia. Children with achondroplasia living in the USA, aged 9 or 10 yo are being invited to participate.

Ascendis Pharma update during the COVID-19 pandemic

2020-04-15Global
Ascendis Pharma shared some notes due to the COVID-19 pandemic with patient organizations advocating for achondroplasia to inform patients and families.

BioMarin update - Impact of the COVID-19 pandemic

2020-04-07Global
Update for European Achondroplasia Associations 8 April 2020 BioMarin is providing this statement to provide general information about the company's clinical development program for achondroplasia in the context of the COVID-19 (Coronavirus) pandemic. "As more cases of COVID-19 are confirmed, we recognize the increased challenges and concerns faced by participants in the BioMarin clinical studies. The safety and well-being of study participants, healthcare providers, and our communities is par […]

How is Pfizer responding to COVID-19 - Dreambird clinical trial

2020-03-28Global
Pfizer is pausing for three weeks the recruitment portion of the company's new and ongoing global interventional clinical studies.

Communication from QED Therapeutics

2020-03-24Global
QED is actively assessing the impact that COVID-19 may have on the work in place and wants to assure patients and families that they are committed to moving forward with the program to develop Infigratinib as an option for children with achondroplasia. 

Creation of clothing line for bone dysplasias - Body measurements questionnaire

2020-01-19Global
A partnership between a patient organization with a textile professional from the north of Portugal is heading to create a clothing line for people with bone dysplasias/short stature.
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