CAH patient’s survey from CAH International
Last year, CAH International held a first joint kick-off, on the basis of which working groups for research, surgery and standard of care were also formed.
The Standard of Care Working Group are mainly concerned with the issue of care at the moment. In order to learn more about the care in the different countries and to define their focus within the working group, they have developed a survey for CAH patients.
“The main goal of the survey is to identify the lifestyle of patients and caregivers living with CAH worldwide. The results of the survey will be elaborated and further discussed in a dedicated workshop to plan further actions to address unmet needs and to share good practices.”
The survey can be found here. Please complete the survey by 15th July 2023.
The surveys are treated anonymously. For any questions, please contact manuela.broesamle@outlook.de
REMINDER: The Living with CAH Support Group and CAH International are not the same organisation. Please take this into consideration when completing their survey. We (the Living with CAH Support Group) are not responsible for any data that you share with CAH International. See Section 10 of our Privacy Policy here.
Recent Blog Posts
Article: Adult Quality of Life with CAH
A new study published in Endocrine Connections explores the lived experiences of adults with congenital adrenal hyperplasia (CAH) and the wide-ranging impact the condition can have on quality of life. Through in-depth interviews with adults living with CAH as well as...
Liquid Hydrocortisone Discontinued in the UK
Liquid hydrocortisone injections have been discontinued in the UK, affecting emergency treatment for people with adrenal insufficiency. This follows the supply shortage reported in February 2025 -...
Medicine security – a national UK priority.
Concerns about medicines shortages in the UK have been highlighted in recent analysis from the House of Lords Public Services Committee and the Royal Pharmaceutical Society. The House of Lords Public Services Committee warns that medicines supply should be treated as...