Encouraging education, fostering research, and providing support for the Loeys-Dietz community.
Canada & United States
Joined June 2011
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"It makes us part of something." Marta of Lisbon, Portugal -- who lives with #Loeysdietzsyndrome -- shares how our 2024 Global Virtual Conference is helping her and her family access expert knowledge and community. Register now: bit.ly/3EPmQEO
bit.ly/4b065UD
Congratulations and THANK YOU from the bottom of our hearts! Our community REALLY showed up yesterday for LDS Day of Giving. We raised over $16K and counting...do we want to try to get to $20K by the weekend? There is still time to make a gift: bit.ly/3VAWsat
Today's the big day! Support our 2024 Loeys-Dietz Day of Giving. There are just 8 hours left to make a big difference! 81 cents of every dollar you give supports the mission you love! Thank you! bit.ly/3VAWsat #loeysdietz
Download this free Kids Activity Booklet to celebrate Loeys-Dietz Awareness Month 2024. bit.ly/3yRlZDn #loeysdietzawarenessmonth #loeysdietz #loeysdietzsyndrome #kids
"You should always trust your instincts. The doctors did not believe that I had anything...I knew something was wrong." That's Nicole's real about life with LDS. bit.ly/3KUpA6F #loeysdietzrealreels #loeysdietzawarenessmonth #loeysdietzsyndrome
Congratulations to the adult and child community artwork contest winners, Stephanie Morales and Ariele Damaa. Their unique, creative designs are featured on select LDS Awareness Month merchandise. Get yours! bit.ly/3KxU2mF
Share your story! What's your real? What do you want people to know about life with LDS? It's easy to spread awareness, just click. vocalvideo.com/c/loeys-dietz… #loeysdietzsyndrome #loeysdietzawareness #loeysdietz #rareconditions #loeysdietzawarenessmont
Thinking about participating in a research study? Check out current studies: loeysdietz.org/en/science-an… #loeysdietz #loeysdietzsyndrome
Want to teach your patient about their Loeys-Dietz diagnosis? Use our resources: loeysdietz.org/en/medical-in… #loeysdietz #loeysdietzsyndrome #medtwitter
Who has an emergency alert card? Did you know we have one you can download? loeysdietz.org/en/resources/… #loeysdietz #loeysdietzsyndrome
Learn about Loeys-Dietz syndrome: loeysdietz.org/en/medical-in… #loeysdietz #loeysdietzsyndrome #raredisease
Raise your hand if you have registered for our Global Virtual Conference. marfan.org/conference/
Get to know your treatment options for Loeys-Dietz syndrome: loeysdietz.org/en/medical-in… #loeysdietz #loeysdietzsyndrome #raredisease
Will we see your family at one of our upcoming Loeys-Dietz events? loeysdietz.org/events #loeysdietz #loeysdietzsyndrome
Have you shared the main characteristics of Loeys-Dietz syndrome with your colleagues? loeysdietz.org/en/medical-in… #loeysdietz #loeysdietzsyndrome #medtwitter
Living Well Within the Rules: loeysdietz.org/news/2021/10/… #loeysdietz #loeysdietzsyndrome #loeysdietzawareness
