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March 18 2018

Check out a recap of McGill Rare Disease Day by the McGill Tribune. Congratulations and well done to all the organizers, participants and speakers!

McGill Rare Disease Day presents an optimistic future for patientsread more

February 21 2018

Read more about what a McGill medical student group is doing to shed light on lesser-known diseases that together affect up to 1 in 12 Canadians.

RareDIG’s inaugural Rare Disease Day was held in the Martin Amphitheater of McIntyre Medical Building at McGill University on February 28. Below is a photo of those in attendance.

Andrei Aldea, Jessie Kulaga-Yoskovitz, Cyril Boulila, Sean Munoz, Johane Gauthier Galli, Joseph Galli, Noemie Villeneuve-Cloutier, Nikola Wilk


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September 01 2016

On September 1st, the Montreal Heart Institute unveiled the Cardiovascular Genetics Centre - a new clinic tasked with detecting heart issues that are often left undiscovered until they become problematic.

Click to view the report by CTV Montreal.

Click to find out more about the Montreal Heart more

May 27 2016

Dear Loeys-Dietz community,

We are a group of researchers from the University of Michigan interested in fighting Loeys-Dietz syndrome (LDS). I have been operating on LDS patients with aortic aneurysms or dissections, but I believe the best way to treat this illness is with prevention. This is why we are pursuing research into LDS by using patients’ blood to generate induced pleuripotent stem cells to study the mechanisms of aortic aneurysm and dissection in LDS patients.

Research Focus: Our team is interested in studying the mechanisms of aneurysmal formation in LDS patients. LDS is associated with mutations of genes in the TGFb pathway; however, the precise mechanisms explaining how mutations in these genes cause aortic aneurysms and dissections are still unknown. Currently, there is no medical treatment to prevent aortic aneurysm and dissection in LDS patients. Our focus is to study the detailed mechanisms, and hopefully, develop new therapies to prevent aneurysms and dissections in LDS patients.

Patient population needed for the research: We would appreciate participation from LDS patient with known mutations in the TGFB2, TGFB3, TGFBR1, TGFBR2, SMAD3, or SMAD4 genes, or any other mutations of more

November 09 2015

Congratulations to Dr. Hal Dietz for his receipt of the 2015 Research Achievement Award presented by the American Heart Association at the American Heart Associated Sceintific Sessions 2015 in Orlando, Florida.

On behalf of the entire team at the Loeys-Dietz Syndrome Foundation Canada, congratulations Dr. Dietz!

Click to read the press release from the AHA.

Photo copyright American Heart Association/Todd Buchanan 2015

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October 19 2015

This past October 18th 2015, our very own Doctor Sarah Bowdin ran the Scotiabank Toronto Waterfront Half-Marathon to raise awareness of Loeys-Dietz syndrome and funds for the Foundation. Doctor Bowdin is a staff physician in the department of Clinical and Metabolic Genetics at the Hospital for Sick Children in Toronto, and is a member of our Medical Advisory Council (MAC). Thank you, Doctor Bowdin, and Go Go Go!  Thank you everyone for your support!

Visit Dr. Bowdin's fundraising page to make a donation

More about Dr. Bowdin and the Medical Advisory Council

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June 25 2015

On June 25th, the family and friends of Nik Dragicevik came together in Detroit to honour Drs. Hal Dietz and Bo Yang for their dedication and commitment to Loeys-Dietz research. Over 150 people attended the event, and funds raised will be earmarked for the Foundation’s Young Investigators’ Award Program. Well done to all those involved in the organization of this wonderful event. 

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June 01 2015

Over the past six months, volunteers Tom Galli and Lindsay Parsons have been building a database of all the research on Loeys-Dietz syndrome, and of the researchers and collaborators involved. Approximately 2,500 articles have been published across 250 medical journals in 25 countries. This database will be an important building block for the Young Investigators’ Award Program. Thank you for all your hard work!read more

May 26 2015

Madame Gail Ouellette, president and C.E.O. of Regroupement québécois des maladies orphelines (R.Q.M.O.), the Quebec rare illness network, was recently honoured at Université du Québec à Montréal's fifteenth Alumni Recognition Gala for her exceptional personal and scientific involvement in the world of rare illnesses, and her career that took her from the world of the laboratory to the world of patient care. The R.Q.M.O. recently opened a Rare Disease Information and Resource Centre, a first of its kind in Canada.

Congratulations, Madame Ouellette, and thank you for your dedication to the cause of rare illnesses in Quebec! Visit the R.Q.M.O.’s website to find out more:

Gail Ouellette honoré pour son dévouement à la cause des maladies rares

Madame Gail Ouellette, présidente et directrice générale du Regroupement québécois des maladies orphelines (R.Q.M.O.), était l’une des lauréates à l’honneur lors du quinzième Gala Reconnaissance de l'UQAM, le 26 mai dernier. Madame Ouellette a été honorée « pour son cheminement qui l’a menée des laboratoires aux patients, son investissement dans l’univers des maladies rares et pour son exceptionnel engagement scientifique et personnel. » Le R.Q.M.O. a d'ailleurs, depuis quelque temps, un centre d'information et de ressources sur les maladies rares, une premiè more