Lynch Syndrome / HNPCC Support Group

20/05/2026

Should I Get Genetic Testing? FORCE answers the most frequent questions about genetic testing on our website at: https://ow.ly/erk150V6zl2

20/05/2026

🚨 Cancer Research Alert!

Cancers researchers in DCU are looking to connect with adults living in Ireland who have received cancer care and have a mobility impairment to take part in a study exploring experiences and needs 🧐

They would also like to hear from family members and daily support persons who provide support to a person with cancer and a mobility impairment.
Your voice is important. Your lived experience and the unique insight it brings can help inform the future of cancer care services, staff training, and policy in Ireland.

Check out the poster for further information Any shares to improve reach are greatly appreciated 🙏

23/04/2026

Calling all Lynch syndrome patients and previvors!

The application window for the 2026 Living With Lynch Patient Workshop is closing soon, don't miss your chance to apply by May 1st!

Every year, a small, carefully selected group of Lynch syndrome patients and previvors comes together for a weekend that many describe as life-changing. The connections made. The knowledge gained. The feeling of finally being truly understood.⁠

This fully funded weekend brings together our community for expert-led education, advocacy training, and the kind of community that only comes from being in a room full of people who truly get it.⁠
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🔹 12–14 participants will be selected. ⁠
🔹 An application and interview process is required.⁠
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If Lynch syndrome is part of your story, and you've been waiting for a sign, this is it. Apply today and take your first step. 💙⁠
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👉 Apply now at LivingWithLynch.org
⁠

23/04/2026

A genetic test result doesn’t always tell the whole story.

For many people, this is the starting point for what comes next, and one part of a much broader experience.

The full experience isn’t always visible.

This is something we understand, and we’re here to support you through all of it.

Find support at your own pace. Start here: https://www.inheritedcancers.org.au/be-supported

20/02/2026

TURNING FEAR INTO POWER: The Future of Lynch Syndrome (2026 Update) 🧬💙

A Lynch syndrome diagnosis can feel like a heavy weight, especially when the news cycle triggers old fears. But the landscape of this condition is changing rapidly. We aren’t just "waiting" for cancer anymore—we are actively intercepting it.

Here are the latest breakthroughs and ways to take control:

📣THE BIG NEWS (2025–2026):

Prevention Vaccines: Trials for the NOUS-209 vaccine (Jan 2026) are showing it can train the immune system to find and kill precancerous cells before they ever become a problem.

Early Detection Breakthroughs:
A new DNA urine test (Feb 2026) now allows for the early detection of urinary tract cancers—often the hardest to spot—before any symptoms appear.

Precision Screening: We now have updated guidelines for specific gene subtypes (MLH1, MSH2, MSH6, PMS2), ensuring your screening plan is as unique as your DNA.

💪 HOW TO manage the “TRIGGER":

Shift Your Mindset: You aren’t just a patient; you are a Previvor. Knowledge is the ultimate tool for prevention.

Take Action: Regular colonoscopies are literal lifesavers. They don't just find cancer; they prevent it by removing polyps.

Find Your "Lynchies": You are not alone. There is a massive community ready to walk this path with you.

🌐 RESOURCES& SUPPORT:

Cancer Council Australia

NSW Health Centre for Genetics Education (CGE) website:
https://www.genetics.edu.au

Cancer Council Victoria

Inherited Cancers Australia

Lynch Syndrome Ireland
Access their 2026 Information Booklets for the newest patient guides.

Lynch Syndrome UK:
Use their Patient Passport and Mobile App to track your screenings and symptoms.

Bowel Cancer UK:
Great guides on Aspirin therapy and lifestyle changes.

Rare Cancers Australia

Support Communities: Join global conversations on Smart Patients or the Lynch Syndrome support groups on Facebook.

🥰If you’re feeling overwhelmed today, take a deep breath. Medicine is moving faster than the fear. You've got this. 🕊️

🥰Lynch Syndrome / HNPCC Support Group🤗

20/02/2026

🎗️SUPPORT Available Rare Cancers Australia

Starting treatment for a rare cancer? We’re here to guide you.

The Treatment booklet from our Rare Cancer Support Guide can help you make sense of what’s ahead, especially when everything feels overwhelming.

It offers clear, practical information to support you in understanding your options and making informed decisions.

Inside you’ll find:
ℹ️ how to plan for treatment and questions to ask
ℹ️ the healthcare professionals you’ll meet
ℹ️ types of treatments and common side effects
ℹ️ what to do when treatments are limited
ℹ️ what to know about clinical trials
ℹ️ managing work and finances
ℹ️ navigating the health system
ℹ️ the science behind cancer and genetic testing.

This advice comes from patients, carers, and health professionals who understand the rare cancer experience.

Download your free Treatment booklet today at: https://bit.ly/3YT93qV

20/02/2026

⭐️ UPDATE: NOUS-209, an off-the-shelf immunotherapy vaccine created by Nouscom

MD Anderson Research News January 16, 2026

Lynch Syndrome significantly increases the lifetime risk of developing multiple cancers, including colorectal and endometrial

NOUS-209, an off-the-shelf immunotherapy vaccine created by Nouscom, trains the immune system to recognize and eliminate precancerous and cancerous cells

This Phase Ib/II study revealed durable immune responses, tumor-targeting activity and early evidence of cancer interception

🔗 Link provided in comments below 👇

20/02/2026

📣 NEWS BREAKTHROUGH for Lynch Syndrome Screening! 🧬

Researchers at Newcastle University have just unveiled a non-invasive urine test that can catch "silent" cancers before symptoms even start.
If you or a loved one has Lynch Syndrome (especially the MSH2 mutation), this is massive news. Instead of invasive procedures, this test looks for genetic "signatures" (MSI) in a simple urine sample to spot early-stage kidney, bladder, and ureter cancers.

Why this is a big deal:

✅ 100% Sensitivity: In trials, it caught every asymptomatic cancer case.

✅ Organ Saving: Finding it early means avoiding major surgeries like kidney removal.

✅ Home Testing: Samples are stable enough to be posted to the lab!

Check out the full breakthrough from Newcastle University in comments below

🔗 Newcastle University: New genetic test for Lynch syndrome - link in comments

06/12/2025

Feeling angry after a cancer diagnosis? You’re not alone. When cancer enters your life, it’s normal to ask, “Why me?”.

You might feel angry at yourself, at others, or at the world. You might also feel scared, stuck, or guilty about how it’s affecting the people you love. These feelings are valid, and there is no right or wrong way to feel after a diagnosis.

There are ways to cope, and people who can help during this time. If you need to talk to a specially trained health professional, call Cancer Council 13 11 20 for free, confidential support. 💛

👉 Head to https://brnw.ch/21wXXli for our free booklet on Emotions and Cancer to learn more about understanding and managing these feelings.

06/12/2025

Inherited Cancers Australia 💬 Live on Instagram
Thurs 11 Dec

Discussion Expert Q & A Instagram Live: conversation about the newly introduced life insurance reform bill and explore why this moment matters for people with inherited cancer risk.

💬 Live on Instagram 💬
Thurs 11 Dec at 1.30 pm AEDT (Canberra)
(12.30 pm QLD | 1.00 pm SA | 10.30 am WA)

Edited on 9 Dec: We have an exciting update for this IG Live ✨

We’ve shifted the time to 11 am AEDT and we’re beyond delighted to share that Julia Mansour (CEO of HGSA) will be joining Robyn and Dr Jane Tiller for this important conversation 💙

Join us next Thursday for a special Instagram Live as we unpack the newly introduced life insurance reform bill and explore why this moment matters for people with inherited cancer risk. 💬

Robyn, our Programs and Advocacy Manager, will lead the conversation with the questions gathered from our community so far.

We’ll be joined by Dr Jane Tiller, Ethical, Legal and Social Adviser in Public Health Genomics at Monash University, and a leading voice behind this reform, and Julia Mansour, Clinical Genetic Counsellor and CEO of the Human Genetics Society of Australasia (HGSA).

Together, they will explore why this bill matters, what it hopes to change and how these early steps in the reform process connect to the challenges our community has been facing for many years.

Join us live, bring your questions and be part of the conversation 💚

💬 Live on Instagram 💬
Thurs 11 Dec at 11 am AEDT (Canberra)
(10 am QLD | 10.30 am SA | 8 am WA)

07/03/2025

Today Show (USA): Lynch Syndrome 2025

Highlighting Lynch Syndrome; surveillance and genetic testing. Excellent video for introducing the topic ⭐️⭐️⭐️⭐️

Having Lynch syndrome makes it more likely to be diagnosed at a young age with several different types of cancers, especially colorectal and uterine.