Next Generation Genetic Counselling

Next Generation Genetic Counselling Genetic counselling helps people to understand and integrate their unique genetic information into t

13/03/2026

đź’› A Story of Strength, Resilience, and Hope đź’›

We’re honored to share a powerful video from the Liver Foundation featuring Jasper and his dad, Peter, as they open up about their journey with Alagille Syndrome.

From Jasper’s diagnosis in early childhood to growing up with chronic liver disease and facing the possibility of a liver transplant, their story offers an honest and heartfelt look at living with ALGS.

Stories like Jasper’s remind us why community, awareness, and advocacy matter so deeply. 💛

We invite you to watch and share:
🎥 https://zurl.co/MSjmj

Thank you to the Liver Foundation for helping shine a light on the ALGS journey.

13/03/2026

Sleep in PWS is not simply about feeling tired.

Excessive daytime sleepiness and disrupted sleep patterns may significantly impact behavior, emotional regulation, and mental health.

In our latest Understanding PWS article, we break down what the science shows, and what it means for families đź’™

Read more: https://hubs.la/Q044wRWP0

10/03/2026

When Kellie was pregnant, she already knew her baby might inherit Long QT Syndrome (LQTS) - it runs through generations of her family. So when her daughter was born, doctors didn’t wait. Based on family history and early ECGs, they started her on a beta blocker right away - before genetic results even came back.

Weeks later, the test confirmed it: she has Long QT Type 2, just like her mom.

Starting treatment from day one gave Kellie something priceless - peace of mind.

Today, her daughter is thriving. Growing. Babbling. Playing. You’d never know she has a serious heart condition. Taking medication isn’t a sign she’s “sick.” It’s simply part of protecting her heart.

Read more at https://sads.org/blog-cat/why-im-at-peace-with-giving-a-beta-blocker-to-my-baby/.

🏷️

07/03/2026

Tuberous sclerosis is often invisible to the world — but for those living with it, it touches nearly every part of daily life. Awareness means recognizing that rare conditions exist beyond what we can see, and that early diagnosis, ongoing care, and research truly matter.
By learning, sharing, and listening, we help create a world where no one with TSC feels overlooked or alone. đź’™

07/03/2026

A negative result is not always the end of the story.

Jessica survived sudden cardiac arrest without a clear diagnosis. Her first genetic test was negative. Five years later, repeat testing identified a PKP2 variant and confirmed Arrhythmogenic Cardiomyopathy. That answer changed her care and guided monitoring for her daughters.

NSGC partnered with the SADS (Sudden Arrhythmia Death Syndromes) Foundation to share why re-evaluation matters in inherited arrhythmias. Read more at the link in comments.

07/03/2026

Genetic testing plays a growing role in pediatric epilepsy care, yet families’ experiences matter as much as clinical results.

New research in the Journal of Genetic Counseling shows that caregivers report high satisfaction and confidence in testing, with clearer benefits when a genetic diagnosis is identified.

Read more with the link in the comments.

25/02/2026

What happens when patients seeking answers are turned away?

Alexa Barbagallo shares concerns about growing barriers to care for people with hypermobility and related connective tissue disorders. Access to answers can take years. For some, options are shrinking.

Read more in the comments.

27/01/2026

👉 Read Hawken’s Encyclopedia Britannica entry and learn why early awareness matters.
https://ow.ly/ciTj50XVQv8

Duchenne doesn’t wait—but awareness often does. At Cure Duchenne, we’re working to change that by amplifying voices like Hawken Miller’s and advancing earlier recognition of Duchenne muscular dystrophy.

27/01/2026

đź“„New in the Journal of Genetic Counseling:

Meaning often becomes most important in moments of uncertainty, illness, and loss. A new paper highlights how logotherapy aligns naturally with genetic counseling by centering meaning, responsibility, and choice alongside science and disease.

Read more about logotherapeutic techniques in genetic counseling in the comments.

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