Living with CAH

2026 Annual General Meeting – Online, 18th October

Jess — Tue, 22 Sep 2026 08:13:21 +0000

2026 Annual General Meeting – Online, 18th October

The CAH Support Group is pleased to announce its 8th Annual General Meeting (AGM).

It will be held in online via Microsoft Teams on Sunday 18th October 2026 at 9:30-10:30 UK time.

If you are a member of the CAH Support Group, you will have received an email containing the agenda and a link and password to book onto the meeting.

If you’re a member of the Group and haven’t received this email, or if you’re not a member and would like to see the agenda or attend, please contact Jess (her details are on the ‘Meet the Team’ page) .

Recent Blog Posts

2026 Annual General Meeting – Online, 18th October

Sep 22, 2026

The CAH Support Group is pleased to announce its 8th Annual General Meeting (AGM). It will be held in online via Microsoft Teams on Sunday 18th October 2026 at 9:30-10:30 UK time. If you are a member of the CAH Support Group, you will have received an email...

Patient Survey: Improving the Delivery of Genetic Results

Sep 14, 2026

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...

Webinar: Finding Your Way – A Parent’s Guide to Rare Disease

Sep 10, 2026

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,...

Patient Survey: Improving the Delivery of Genetic Results

Jess — Mon, 14 Sep 2026 09:17:42 +0000

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

2026 Annual General Meeting – Online, 18th October

Sep 22, 2026

Patient Survey: Improving the Delivery of Genetic Results

Sep 14, 2026

Webinar: Finding Your Way – A Parent’s Guide to Rare Disease

Sep 10, 2026

Webinar: Finding Your Way – A Parent’s Guide to Rare Disease

Jess — Thu, 10 Sep 2026 09:07:58 +0000

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, trusted resources and hope for families navigating a rare genetic condition.

The event will be hosted by Sarah Wynn, CEO of Unique and Frances Elmslie, Consultant Clinical Geneticist.

Hear the stories behind the guide and learn from parents and authors Adam Clatworthy and Melanie Dixon about their own quest to find the right support. They will be sharing their personal experiences to help families to feel less alone.

Everyone is welcome to join!

You can register here: Finding your way: A Parent’s Guide to Rare Disease

Recent Blog Posts

2026 Annual General Meeting – Online, 18th October

Sep 22, 2026

Patient Survey: Improving the Delivery of Genetic Results

Sep 14, 2026

Webinar: Finding Your Way – A Parent’s Guide to Rare Disease

Sep 10, 2026

New report highlights access gap for innovative medicines

Jess — Mon, 27 Jul 2026 10:12:27 +0000

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 countries (including medicines for babies with CAH), citing funding pressures and lengthy reimbursement processes as key factors.

Read the full report here: https://www.medicinesaustralia.com.au/wp-content/uploads/sites/65/2026/07/03826-MA-BitterPill-Report_Accessible_Final.pdf (Summary and title image generated using AI)

Recent Blog Posts

2026 Annual General Meeting – Online, 18th October

Sep 22, 2026

Patient Survey: Improving the Delivery of Genetic Results

Sep 14, 2026

Webinar: Finding Your Way – A Parent’s Guide to Rare Disease

Sep 10, 2026

Help Shape New UK Sick Day Guidance for Young People with Adrenal Insufficiency

Jess — Tue, 07 Jul 2026 09:59:28 +0000

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 British Society for Paediatric Endocrinology and Diabetes (BSPED), with support from patient organisations including Living with CAH. The team is seeking input from young people aged 10–18 and parents of children with adrenal insufficiency to ensure the resources meet the real needs of families. Participation is online and requires only a few hours of your time.

This is an excellent opportunity to contribute to guidance that could benefit thousands of children, young people and families across the UK.

Find out more and sign up here:
https://www.surveymonkey.com/r/8MXLXRT

You can also read the full announcement from the Addison’s Disease Self-Help Group:
https://www.addisonsdisease.org.uk/news/take-part-improve-sick-day-guidance-for-young-people

(Summary and title image generated using AI)

Recent Blog Posts

2026 Annual General Meeting – Online, 18th October

Sep 22, 2026

Patient Survey: Improving the Delivery of Genetic Results

Sep 14, 2026

Webinar: Finding Your Way – A Parent’s Guide to Rare Disease

Sep 10, 2026

Article: Adult Quality of Life with CAH

Jess — Mon, 18 May 2026 14:09:53 +0000

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 family members, researchers identified significant physical, psychological and social challenges that are often overlooked in routine care and existing quality-of-life assessments.

The study highlights issues including trauma linked to early medical interventions, poor body image and self-esteem, difficulties with relationships and sexual wellbeing, concerns around fertility, and the long-term emotional impact of living with a complex lifelong condition.

The authors conclude that more comprehensive, patient-centred approaches are needed to better support adults with CAH and improve future care and outcomes.

Read the full study here.

(Summary and title image generated using AI)

Recent Blog Posts

2026 Annual General Meeting – Online, 18th October

Sep 22, 2026

Patient Survey: Improving the Delivery of Genetic Results

Sep 14, 2026

Webinar: Finding Your Way – A Parent’s Guide to Rare Disease

Sep 10, 2026

Liquid Hydrocortisone Discontinued in the UK

Jess — Fri, 27 Mar 2026 08:24:29 +0000

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 – https://www.livingwithcah.com/drug-shortage-alert-injectable-hydrocortisone/

An alternative (hydrocortisone powder and diluent) is still available, but requires mixing before use, which may be more difficult in urgent situations.

Read the full article for details and guidance – https://www.addisonsdisease.org.uk/news/liquid-hydrocortisone-discontinued

Recent Blog Posts

2026 Annual General Meeting – Online, 18th October

Sep 22, 2026

Patient Survey: Improving the Delivery of Genetic Results

Sep 14, 2026

Webinar: Finding Your Way – A Parent’s Guide to Rare Disease

Sep 10, 2026

Medicine security – a national UK priority.

Jess — Fri, 06 Mar 2026 09:50:41 +0000

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 a national resilience issue, noting the UK’s heavy reliance on complex global supply chains and overseas manufacturing. It argues that the current approach is too reactive and calls for stronger national leadership, better data sharing and clearer oversight of shortages.

The Royal Pharmaceutical Society also emphasises the growing impact on patients and pharmacy teams. Even when only a small proportion of medicines are affected, shortages can lead to treatment delays, additional workload for healthcare professionals and anxiety for patients.

Both organisations stress the need for coordinated action to strengthen supply chains and ensure reliable access to medicines.

Read the full articles here:

Lords Committee calls for proactive leadership to tackle medicines supply

Royal Pharmaceutical Society – Medicines Shortages: Solutions for empty shelves

(Summary and title image generated with AI)

Recent Blog Posts

2026 Annual General Meeting – Online, 18th October

Sep 22, 2026

Patient Survey: Improving the Delivery of Genetic Results

Sep 14, 2026

Webinar: Finding Your Way – A Parent’s Guide to Rare Disease

Sep 10, 2026

2026 CAH Support Group Conference, 28th June, Sheffield

Jess — Fri, 06 Feb 2026 09:30:38 +0000

2026 CAH Support Group Conference, 28th June, Sheffield

SUNDAY 28th JUNE 2026 9.30 -16:00

The Old Rectory, Handsworth, Sheffield, S13 9BZ

theoldrectoryhandsworth.co.uk

Those living with CAH and their families and friends are invited to the biennial conference of CAH Support Group.

Visit our online booking page here to find out more or book a place.

Recent Blog Posts

2026 Annual General Meeting – Online, 18th October

Sep 22, 2026

Patient Survey: Improving the Delivery of Genetic Results

Sep 14, 2026

Webinar: Finding Your Way – A Parent’s Guide to Rare Disease

Sep 10, 2026

A selection of articles from around the world in 2025

Jess — Thu, 06 Nov 2025 11:53:39 +0000

A selection of articles from around the world in 2025

Here’s a selection of three articles from around the world in 2025 about CAH. They cover treatment methods and long term outcomes for people with CAH – making for interesting reading for anyone interested in or affected by CAH.

These articles are not a recommendation and are not endorsed by the CAH support group – they are provided for informational purposes only and should be discussed with your clinician as you see fit.

“Optimizing glucocorticoid therapy in congenital adrenal hyperplasia and analog conditions: the intersection of dose reduction, patient care, and coverage in the US”

“Long-term outcomes of congenital adrenal hyperplasia due to 21-hydroxylase deficiency: a retrospective study from a tertiary care center in Saudi Arabia“

“Endothelial dysfunction in congenital adrenal hyperplasia due to 21-hydroxylase deficiency: current knowledge and novel biomarkers”