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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"

The Norwegian Adult Achondroplasia Study

2019-01-24Research
The Sunnaas Rehabilitation Hospital is conducting an observational study on the prevalence of medical complications in adults with achondroplasia and their impact on daily activities entitled "The Norwegian Adult Achondroplasia Study".

Observational Study Investigating Clinical & Anthropometric Characteristics of Children With Achondroplasia

2019-01-23Research
Observational Study Investigating Clinical & Anthropometric Characteristics of Children With Achondroplasia, conducted by Therachon, is an observational study to investigate natural history of achondroplasia. It is currently recruiting for a number of countries.

Lifetime Impact of Achondroplasia Study in Europe - LIAISE

2019-01-03Research
LIAISE is the Lifetime Impact of Achondroplasia Study in Europe. It will gather information on the clinical and medical interventions of people with achondroplasia, individuals' and caregivers' quality of life and the impact of this condition on education, employment and social life.

Breaking news - Preliminary Phase 1 data for TransCon CNP

2018-11-30Research
On the 28th Nov 2018, Ascendis Pharma A/S announced positive preliminary results from a phase 1 trial of TransCon CNP.

Report on the World Orphan Drug Congress 2018

2018-11-16Research
Here you will find the highlights of the World Orphan Drug Congress, WODC 2018, where pharmaceutical companies, contract research organizations (CROs) and Health Technology Assessment agencies were heavily represented, with the participation of some patient organizations, discussing pathways related to orphan drug development and clinical trials. The active participation of patients in research was also a key topic.

QED Tx – a new company working on a treatment for achondroplasia

2018-08-15Research
Bridge Bio has launched a new biotechnology company, QED Therapeutics focused on precision medicine for FGFR-driven diseases, where achondroplasia is included.
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