Embracing all Genetic Aortic Disorders - Awareness, Support, Education, Research & Resources for Patients, Families, & Health Care Professionals
Toronto, Ontario
Joined September 2015
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New research is expanding what we know about Shprintzen‑Goldberg syndrome (SGS).
Learn more by reading the full study: jmg.bmj.com/content/62/9/600…
#ShprintzenGoldberg #RareDisease #Genetics #Cardiovascular #Health #Research #NewStudy #Marfan
GADACanada retweeted
FTAAD is often associated with ACTA2-related conditions, including MSMDS.
Awareness is key to earlier recognition and care.
@JohnRitterFdn @AorticDissectUK @AorticDisorders @AorticAssociat2 #MusculoLiso #ConnectiveDisorders
ALT FTAAD, associated diagnosis in ACTA2 conditions
Missed our webinar on Healthy Living and Aortopathy with Dr. Nathaniel Moulson? You can now watch the full webinar anytime. Learn about exercise, aortic health, clinical guidelines, and emerging evidence.💻
▶️ Watch here: youtu.be/1YOadTXtqyo
#AorticHealth #Exercise #AortaEd
Register 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: eventbrite.com/.../rare-card…...
#genetics #aortopathy #raredisease #conference #medicalscience #cardiology #aortaed
Save the Date for the 4th Heritable Aortic Disorders (HAD4) Symposium!
📍 UBC Robson Square, Vancouver, BC
🗓️ May 22–23, 2026
🔗 Learn more via the HAD website: heritableaorticdisorders.com…
Mark your calendars and stay tuned for more details.
#Aorta #MarfanSyndrome #LoeysDietz
Every story shared helps us see that genetic aortic disorders are hiding in plain sight.
Kerry-Anne's story is a powerful reminder that early recognition and increased awareness can save the lives of Canadians affected by genetic aortic disorders.
This holiday season, we honour the strength of families affected by these conditions and the loved ones they have lost far too soon.
Your gift helps GADA increase awareness and prevent unnecessary loss of life - visit canadahelps.org/en/dn/474 to donate today.
📢 Researchers at Université de Montréal are inviting participants for an important online event on Heritable Connective Tissue Disorders (HCTDs)!
Learn more and register here: redcap.chumontreal.qc.ca/red…
#MarfanSyndrome #LoeysDietz #vEDs #ConnectiveTissueDisorder #MedicalResearch
Today, on #GivingTuesday, you can help make a difference for individuals and families living with genetic aortic disorders by supporting our goal of raising $10,000 toward Canadian research.
Many people live with signs of genetic aortic disorders for years without knowing the cause. Others only learn they’re at risk after a sudden, life-threatening dissection. These experiences reflect real gaps in access to timely care, diagnosis, screening, and genetic testing.
GADA is working to close this gap by investing in Canadian research that leads to better long-term care for those living with genetic aortic disorders.
This #GivingTuesday, your holiday gift directly supports lifesaving work. Donate and help us reach our goal to raise $10,000. canadahelps.org/en/dn/474
This holiday season, you can make a meaningful difference for individuals and families living with genetic aortic disorders.
GADA is launching our year-end goal to raise $10,000 in support of Canadian research that saves lives.
Every gift helps drive discoveries that improve diagnosis, treatment, and long-term care. When you give to GADA, you’re helping advance research that changes and saves lives.
🔗 Visit canadahelps.org/en/dn/474 to donate today. Every dollar makes a difference.
🧠 On Mental Health Awareness Day (October 10), GADA invites patients, families, caregivers, and healthcare professionals to a special, free webinar on November 5, 2025.
Register now at us06web.zoom.us/webinar/regi… to submit your questions!
At the 2025 Montalcino Aortic Consortium (MAC) Summit, top geneticist, Dr. Reed Pyeritz, emphasized the need for a useful terminology for Heritable Thoracic Aortic Diseases, to ensure more accurate and precise treatment for patients. #AortaHealth
At the 2025 American College of Cardiology Annual Scientific Session presented new data showed the significance of BAV in the context of heritable aortic diseases, as the prevalence of BAV is notably higher (5%) compared to the general population (1-2%). #BAV
Collaboration is at the heart of MAC’s research.
MAC members, Dr. Siddharth Prakash and Dr. David R. Murdock are developing UTHealth Genomic Medicine Guidance App designed to support clinicians and empower patients living with #GAD
🔗 youtube.com/watch?v=d13Q_u2A…
💡Scientists have used a powerful gene-editing tool—CRISPR-Cas9—to fix a disease-causing ACTA2 R179H genetic variant in mice with features of Multisystemic Smooth Muscle Dysfunction Syndrome (MSMDS)
Read the full article here: nature.com/articles/s41551-0…
#geneticresearch #ACTA2
