Patient Survey: Improving the Delivery of Genetic Results

CAH is a rare genetic condition and many of us will have received results of genetic testing at some point on our CAH journey.
When you received these reults might not have been at the best time – pehaps you received genomic test results while you were driving, on the school run and even at work. That’s why we are supporting the NHS South East Genomic Medicine Service in their quest to improve the way people receive their genetic results.
To do that, we would encourage you to complete this short survey about your personal experience of receiving your genetic results.
They want to hear the positive, the challenging and everything in-between. The more feedback they get, the more improvements they can make. The closing date is 16th October.
Find the survey link here: Patient Survey: Improving the delivery of genetic results – Fill out form
Recent Blog Posts
Webinar: Finding Your Way – A Parent’s Guide to Rare Disease
Join the NHS South East Genomic Medicine Service and Unique on Wednesday 16th September 2026 at 12-1pm on Teams to celebrate the launch of “Finding Your Way: A Parent's Guide to Rare Disease”. Written by parents, for parents, this new guide offers practical support,...
New report highlights access gap for innovative medicines
The CAH Support Group recently provided input into a new Medicines Australia report about access to innovative medicines in Australia. The report, now published, warns that Australian patients are missing access to some innovative medicines available in comparable...
Help Shape New UK Sick Day Guidance for Young People with Adrenal Insufficiency
Young people with adrenal insufficiency (including CAH and Addison's disease) and parents/carers are being invited to help shape new UK-wide resources on sick day rules and emergency management. The project is being led by Edge Hill University in partnership with the...


