Genetic Aortic Disorders Association Canada

05/01/2026

This May, GADA is raising funds to advance the translation of research into clear, accessible, and practical resources for patients and families.

We know that not everyone has the time or background to read and interpret scientific studies and clinical guidelines. At the same time, we hear from patients and families who are looking for clear and trustworthy answers to their questions.

One of GADA’s ongoing priorities is to provide accessible and research-informed resources which are both easy to share and understand. We know that this has a real impact on the lives of our community, but effective knowledge translation takes time, care, and dedicated resources.

Great research deserves to be shared, but we can’t do it alone.

Help us continue to ensure that research becomes real care. Support GADA in reaching our goal of $10,000 by May 31.

Donate today at https://www.canadahelps.org/en/dn/146227

04/29/2026

This study on vascular Ehlers‑Danlos syndrome (vEDS) in children was featured in today’s Aortic Science: Research Highlights, part of GADA Canada’s e‑newsletter. In this edition, we shared key findings on why early diagnosis and follow‑up during childhood may play an important role in long‑term management and clinical decision‑making.

Aortic Science: Research Highlights provides clear summaries of newly published research, along with direct links to the original articles for those who wish to explore the full studies in greater depth.

📖 Read the full vEDS article: https://pmc.ncbi.nlm.nih.gov/articles/PMC11893879/

If you’d like to receive future research highlights—along with news, updates, and educational resources—you can subscribe to GADA Canada’s mailing list at the bottom of our home page here: https://www.gadacanada.ca/

04/09/2026

Hybrid prosthesis in frozen elephant trunk procedures for hereditary thoracic aortic diseases: a 14-year single-aortic center experience

People with Hereditary Thoracic Aortic Disease (HTAD) like Marfan syndrome, Loeys–Dietz syndrome, vascular Ehlers–Danlos syndrome, and ACTA2 gene-related disease often develop life-threatening problems in the aortic arch and descending aorta. Treating these areas surgically is especially challenging, and long-term data and research in this area is limited.

In this study, researchers examined outcomes for 51 HTAD patients from a specialized surgical approach called the Frozen Elephant Trunk (FET) procedure. This procedure combines open surgery with a stent graft in individuals with hereditary thoracic aortic disease.

🩺 What did they find?
The procedure was safe in the short and mid-term, with very high survival rates
There were no cases of paralysis and low rates of serious neurological complications
Most patients did well after planned surgery
Many patients still needed additional aortic procedures later in life

👉 Why this matters:
This study supports the FET procedure as a viable option for managing complex aortic disease in people with genetic aortic conditions. While long-term outcomes still need further study, these findings help inform surgical decision-making.

Read the full article here: https://pubmed.ncbi.nlm.nih.gov/41310758/

04/01/2026

New national guidance from the Canadian Cardiovascular Society is strengthening the role of genetic testing in cardiovascular care for inherited conditions, including thoracic aortic disease.

We’re proud that GADA Canada is recognized as a trusted resource for patients and clinicians navigating this evolving landscape. But guidelines alone don’t change care; education, advocacy, and research do.

Your support helps GADA Canada continue to be there for families and caregivers, while funding research and knowledge translation that turn recommendations into real‑world care. Together, we can help ensure earlier answers, safer care, and better outcomes.

🔗 Read the guidelines here: https://onlinecjc.ca/article/S0828-282X(25)01067-0/fulltext

03/24/2026

We are pleased to share that registration is now open for the 4th Heritable Aortic Disorders (HAD4) Symposium.

The 2026 HAD Symposium will bring experts together from across Canada and internationally to discuss new developments in the fields of genetics, diagnosis, and management of hereditary thoracic aortic disorders. This is an in-person event, with sessions offered in English.

The symposium is broken down into 2 days:

Day 1 will be scientific sessions for medical professionals only, dedicated to updating physicians, specialists, researchers, medical staff, students, nurses, and allied health professionals with respect to the latest research, diagnostic protocols, and the health management of individuals diagnosed with genetic aortic disorders.

This meeting is eligible for CME Credits (Canadian Cardiovascular Society MOC Section 1 Accreditation).

Day 2 is the community education forum, dedicated to patients and their families, with informative presentations and small group workshops conducted by local and international experts.

Visit https://www.heritableaorticdisorders.com/registration to register today.

02/28/2026

At GADA, we’re proud to recognize Rare Disease Day and stand with the global rare disease community. Learn more through Canadian Organization for Rare Disorders.

Join us in lighting up for Rare Disease Day! https://www.raredisorders.ca/rare-disease-day

Genetic aortic diseases are rare:
• Marfan syndrome affects approximately 1 in 5,000–10,000 people.
• Loeys-Dietz syndrome is estimated to occur in about 1 in 50,000 people.
• Vascular Ehlers-Danlos syndrome affects approximately 1 in 150,000 people.
• Arterial tortuosity syndrome occurs in roughly 1 in 1,000,000 people.
• The prevalence of non-syndromic aortopathies associated with genes such as ACTA2, MYH11, and MYLK remains unknown.
Individually, these conditions are rare and likely underdiagnosed. But collectively, rare diseases are common.

Today, we recognize and celebrate the strength of the 1 in 12 people worldwide living with a rare disease.

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02/27/2026

With the Olympics sparking conversation about sports and physical performance, it’s a timely moment to talk about what exercise means for people living with genetic aortic disorders. For those managing an aortic condition, understanding what safe physical activity looks like is especially important. 🏅

That’s why we’re pleased to share that our recent webinar—Healthy Living and Aortopathy: Incorporating Exercise with an Aortic Disorder, led by Dr. Nathaniel Moulson—is now available to watch on YouTube.

This session explores:

✨ Safe and effective exercise for people with genetic aortic conditions
✨ Current clinical guidelines
✨ Gaps in evidence and emerging research
✨ Practical advice for patients, caregivers, and clinicians

▶️ Watch the full webinar: https://youtu.be/1YOadTXtqyo

On January 22nd GADA hosted a webinar titled 'Healthy Living and Aortopathy: Incorporating Exercise with an Aortic Disorder' led by Dr. Nate Moulson.For indi...

02/10/2026

Acute type A aortic dissection (ATAAD) is a life-threatening emergency that requires immediate surgery and often involves the aortic root. There has long been debate over the best surgical approach to repair the aortic root. In this large meta-analysis, researchers reviewed data from 40 studies involving 11,734 patients to compare two strategies: aortic root replacement (ARR) and the conservative root approach (CRA).

ARR includes two procedures:
Bentall procedure: replacement of the aortic root and valve using a composite graft
Valve-sparing root replacement (VSRR): preserves the patient’s native aortic valve

CRA involves:
Preserving and reinforcing the native aortic root
Resuspending the aortic valve or replacing it with a mechanical or biological prosthetic valve

🫀 What did they find?
Overall survival was similar between ARR and CRA
ARR was associated with a lower risk of reoperation compared to CRA
Among ARR techniques, VSRR was associated with better long-term survival compared to CRA, while the Bentall procedure was not.

👉 Why this matters:
These findings show that there is no one-size-fits-all approach to aortic root repair in ATAAD. Each strategy has benefits and trade-offs, and surgical decisions should be tailored to the individual, especially for patients with underlying genetic or connective tissue disorders.

Read the full article here: https://pubmed.ncbi.nlm.nih.gov/41353548/

02/05/2026

Register now for the free, virtual Rare Cardiac Conditions Conference, hosted by the University of Ottawa Heart Institute on February 27. This one‑day event features expert sessions on rare cardiac conditions, including a Genetic Aortopathy session with MAC member Dr. Julie Richer. 💻🧬

👉 Learn more & register here: https://www.eventbrite.com/e/rare-cardiac-conditions-conference-tickets-1736180395299

01/28/2026

Save the Date!

The 4th Heritable Aortic Disorders (HAD4) Symposium is coming to Vancouver on May 22–23, 2026.

This two‑day, in‑person event brings together leading clinicians and researchers (Day 1) and offers dedicated learning and workshops for patients and families (Day 2).

📍 UBC Robson Square, Vancouver, BC
📅 May 22–23, 2026

🔗 Learn more via the HAD website: https://www.heritableaorticdisorders.com/

Registration is not open yet, but will be opening soon—mark your calendars and stay tuned for more details.

01/27/2026

GADA Canada is deeply grateful to the family and friends of Elias Dourakis who came together to honour him through more than $3,500 in donations made in his memory.

This generosity supports vital research and education initiatives as well as improved care for individuals and families living with genetic aortic disorders. Thank you to those honouring Elias Dourakis, your donations support initiatives that improve outcomes for Canadians with genetic aortic disorders and help prevent the unnecessary loss of life.

01/15/2026

On January 22, 2026 GADA will host a special webinar titled ‘Healthy Living and Aortopathy’ led by

Attendees will learn about the contemporary evidence and recommendations for exercise and aortic disorders, while also gaining an understanding of the clinical guideline recommendations, gaps in evidence, and emerging data and considerations.

Register now to secure your spot and to submit your questions: https://us06web.zoom.us/webinar/register/WN_LFyA56_6SAeWBLy35p69KA