Genetic Aortic Disorders Association Canada

Genetic Aortic Disorders Association Canada Embracing Marfan syndrome and all Genetic Aortic Disorders through Research, Education, & Support

Aortopathy Care 101 🩺Registered Nurse Kaitlin Finsterwald from the Heritable Aortopathies Clinic at St. Paul’s Hospital ...
05/28/2026

Aortopathy Care 101 đź©ş

Registered Nurse Kaitlin Finsterwald from the Heritable Aortopathies Clinic at St. Paul’s Hospital in Vancouver, B.C. explains what you need to know and how to prepare for an Echocardiogram.

An echocardiogram, or “echo,” is an ultrasound of your heart. It uses sound waves (no radiation) to create real-time images to help your care team monitor your heart and aorta in conditions like Marfan, vEDS, LDS, and other aortopathies.

An echo is often the first and most common test used to monitor the aorta and heart over time as it is safe, accessible, and repeatable without radiation.

This post is part of the Aortopathy Care 101 series, designed to help patients and families better understand CT Scans, MRIs, and Echocardiograms.

Aortopathy Care 101 🩺Registered Nurse Kaitlin Finsterwald from the Heritable Aortopathies Clinic at St. Paul’s Hospital ...
05/25/2026

Aortopathy Care 101 đź©ş

Registered Nurse Kaitlin Finsterwald from the Heritable Aortopathies Clinic at St. Paul’s Hospital in Vancouver, B.C. explains what you need to know and how to prepare for an MRI scan.

An MRI (magnetic resonance imaging) uses powerful magnets + radio waves (no radiation) to create detailed images of your body to help your care team assess the head/neck, heart, and blood vessels from head to hips depending on your condition (vEDS, Marfan, LDS, and more).

MRI is a safe, detailed way to monitor your blood vessels and heart without radiation, and helps guide long-term care in aortopathy conditions.

This post is part of the Aortopathy Care 101 series, designed to help patients and families better understand CT Scans, MRIs, and Echocardiograms.

Aortopathy Care 101 🩺Registered Nurse Kaitlin Finsterwald from the Heritable Aortopathies Clinic at St. Paul’s Hospital ...
05/22/2026

Aortopathy Care 101 đź©ş

Registered Nurse Kaitlin Finsterwald from the Heritable Aortopathies Clinic at St. Paul’s Hospital in Vancouver, B.C. explains what you need to know and how to prepare for a CT scan.

A CT (computed tomography) scan is an advanced imaging test that uses X-rays and computers to create detailed images, giving your care team a clear, 3D look at your aorta.

This post is part of the Aortopathy Care 101 series, designed to help patients and families better understand CT Scans, MRIs, and Echocardiograms.

The St. Paul’s Clinic is also part of the team hosting the 2026 HAD Symposium this weekend (May 22–23), bringing together experts from across Canada and internationally to discuss new developments in genetics, diagnosis, and management of hereditary thoracic aortic disorders.

A new diagnosis can feel overwhelming. Here are a few simple, supportive reminders from Registered Nurse, Kaitlin Finste...
05/15/2026

A new diagnosis can feel overwhelming. Here are a few simple, supportive reminders from Registered Nurse, Kaitlin Finsterwald, from the Heritable Aortopathies Clinic at St. Paul’s Hospital, that may help you and your family navigate the early days and your ongoing care.

The St. Paul’s Heritable Aortopathies (HA) Clinic is also part of the team hosting the 2026 HAD Symposium, which brings experts together from across Canada and internationally to discuss new developments in the fields of genetics, diagnosis, and management of hereditary thoracic aortic disorders. Visit https://www.heritableaorticdisorders.com for more information.

📅 May 22 — CME Accredited Professional Day
📅 May 23 — Patient Day

đź“ŤVancouver, B.C.

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"If you or a family member has been recently diagnosed with an aortic aneurysm or genetic aortic disorder it is common t...
05/14/2026

"If you or a family member has been recently diagnosed with an aortic aneurysm or genetic aortic disorder it is common to have questions, feel uncertain, and need time to process a new diagnosis.

Everyone’s journey is different, and there’s no “right” pace for taking things in. Your care team is here to support you through it, and you're encouraged to ask any questions you might have."

Registered Nurse, Kaitlin Finsterwald, from the Heritable Aortopathies Clinic at St. Paul’s Hospital, answers some of the most common questions from patients when they’re first diagnosed.

The St. Paul’s Clinic is also part of the team hosting the 2026 HAD Symposium, which brings experts together from across Canada and internationally to discuss new developments in the fields of genetics, diagnosis, and management of hereditary thoracic aortic disorders. Visit https://www.heritableaorticdisorders.com/ for more information.

📅 May 22 — CME Accredited Professional Day
📅 May 23 — Patient Day

đź“Ť Vancouver, BC

May 11–17 is National Nursing Week. Meet Kaitlin Finsterwald, an RN at St. Paul’s Clinic in Vancouver, BC.This week, GAD...
05/13/2026

May 11–17 is National Nursing Week. Meet Kaitlin Finsterwald, an RN at St. Paul’s Clinic in Vancouver, BC.

This week, GADA Canada is recognizing the important work nurses like Kaitlin do every day, from answering patient questions to helping explain complex hospital equipment and care.

The St. Paul’s Clinic is also part of the team hosting the 2026 HAD Symposium, which brings experts together from across Canada and internationally to discuss new developments in the fields of genetics, diagnosis, and management of hereditary thoracic aortic disorders.
📅 May 22 — CME Accredited Professional Day
📅 May 23 — Patient Day
đź“Ť Vancouver, BC

To every nurse caring for the HAD community: thank you.
This month, GADA is also fundraising to support its knowledge translation work. Donate today to help us reach our goal of $10,000 by May 31. https://www.canadahelps.org/en/dn/146227

đź”— To learn more, visit https://www.heritableaorticdisorders.com

New research is expanding what we know about Shprintzen‑Goldberg syndrome (SGS).This 2025 study reviewed an internationa...
05/06/2026

New research is expanding what we know about Shprintzen‑Goldberg syndrome (SGS).

This 2025 study reviewed an international cohort of 29 patients to better understand how SGS affects the cardiovascular system, comparing these findings with what is known in Marfan syndrome.

The results suggest that cardiovascular features in SGS may be more significant than previously recognized.

As research into rare genetic conditions continues to grow, studies like this help shape how these conditions are recognized and managed.

đź“– Learn more by reading the full study: https://jmg.bmj.com/content/62/9/600.long

Reminder that registration for the 2026 HAD Symposium closes on Friday, May 8th. Register today: https://www.heritableao...
05/05/2026

Reminder that registration for the 2026 HAD Symposium closes on Friday, May 8th. Register today: https://www.heritableaorticdisorders.com/registration

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.

📅 May 22 — CME Accredited Professional Day
📅 May 23 — Patient Day
đź“Ť Vancouver, BC

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

This study on vascular Ehlers‑Danlos syndrome (vEDS) in children was featured in today’s Aortic Science: Research Highli...
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.

đź“– 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/

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