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This Rare Disease Day, we are celebrating you.
Celebrate with us by reading our LDS stories and joining our “I’m Rare and I’mPerfect” campaign.
Our LDS Stories
Hélène
“After over 20 years of doctors telling me not to worry about having Marfan syndrome, my son and I were diagnosed with Loeys-Dietz syndrome (LDS) type 2."
Amiel
"During my diagnosis, I remember this overwhelming sense of anxiety, stress, and fear, and how I wish I had someone to talk to who could relate to my personal LDS experience."
Kristýna
“I’m an optimist. I firmly believe that the public and especially doctors will see that we, the invisible ones, exist. That is why I am writing my story now."
Cynthia and her partner, Steve
“Steve and I hope that by sharing our story we will encourage those who are struggling to talk about the impact Loeys-Dietz syndrome can have, and at the same time realize there is a way forward."
Dr. Tiscar Cavalle-Garrido
Dr. Cavalle-Garrido has long been a leader and champion for LDS diagnosis, multidisciplinary care, and research.
For her, working with children and families is an honour: “there is nothing more rewarding than helping a sick child get better.”
Kimberly and her son, Logan
"From the time I was five months pregnant I was told that Logan would not survive once he was born. Today, he is 12 years old.
As a parent to a child with LDS you never know what the next day is going to bring. ”
Join our “I’m Rare & I’mPerfect” campaign by:
Raising Awareness
Raise awareness online by joining us on social media: liking and sharing our posts and creating your own about Loeys-Dietz syndrome.
Or, raise awareness in-person with a workplace lunch and learn or presentation at school.
Sharing our Graphics
Show your support by posting our campaign graphics on your Instagram, Facebook, or Twitter.
Starting a Fundraiser
Raising funds for the Foundation is one of the best ways to create a lasting impact for people with Loeys-Dietz syndrome.
Staying Connected
Our community is here for you. Through our social media, newsletter, and LDS helpline, let’s stay connected.
Reading our Rare Disease Statement
The Foundation is transforming the future of Loeys-Dietz syndrome.
To learn about the status of rare disease in Canada, as well as our 4-part pledge to transform the future of LDS, read our statement.
Join our “I’m Rare & I’mPerfect” campaign by:
Raising Awareness
Raise awareness online by joining us on social media: liking and sharing our posts and creating your own about Loeys-Dietz syndrome.
Or, raise awareness in-person with a workplace lunch and learn or presentation at school.
Sharing our Graphics
Show your support by posting our campaign graphics on your Instagram, Facebook, or Twitter.
Starting a Fundraiser
Raising funds for the Foundation is one of the best ways to create a lasting impact for people with Loeys-Dietz syndrome.
Staying Connected
Our community is here for you. Through our social media, newsletter, and LDS helpline, let’s stay connected.
Reading our Rare Disease Statement
The Foundation is transforming the future of Loeys-Dietz syndrome.
To learn about the status of rare disease in Canada, as well as our 4-part pledge to transform the future of LDS, read our statement.