When living with a rare condition, it can be very easy to never meet another person with the same co…
Genetic Alliance UK is undertaking research to help understand the impact of parenting children affected by Adrenal Insufficiency including Congenital Adrenal Hyperplasia (CAH). This work is being undertaken as part of the TAIN (Treatment of Adrenal Insufficiency in Neonates) project, which has been funded by the European Commission and aims to develop a new neonatal treatment.
Genetic Alliance UK is now undertaking research to explore the impact of adrenal insufficiency on parents of affected children, and to gather health economic data.
The survey is now online and should take no more than 40 minutes to complete. The survey is available in English, German or Dutch. To find out more or to complete the survey, please click on the links below.
Survey in English
Survey in German
Survey in Dutch
If you have questions, or want to find out more about this project please contact our Research Associate, Amy Simpson, for more information.