The Marfan Foundation

Thank you National Health Council for amplifying our life-saving, life-enhancing efforts during VEDS Action Month. Read the story on the NHC blog https://lnkd.in/e_S7aEbm #VEDS #VEDSActionMonth24 #VEDSAwareness

Don't miss your chance to meet the experts and enjoy time with community. Sign up today for the November 2 New England Regional Symposium. https://ow.ly/nv2H50TO0oN #Marfan #VEDS #LoeysDietz

Thank you to everyone who attended Dr. Kim Eagle's 10/15 webinar, highlighting research developments from Tromso Aorta 2024. If you took part, what was one new thing you learned or one topic you'd love to know more about? Tell us in comments. We'll use your ideas to shape future events and resources via our GenTAC Alliance division. #Marfan #LoeysDietz #VEDS www.gentacalliance.org

Michele’s real is being an ER nurse whose son was initially thought to have VEDS three years ago. Though genetic testing proved otherwise, her professional and personal experiences have made Michele an advocate for ensuring people with VEDS receive fast, appropriate medical treatment. #VEDSRealReels #VEDSActionMonth24 #VEDSAwareness #VEDS

Big VEDS family congrats to the de La Garza family. They have had it formally declared "VEDS Action Month" in Brownsville, Texas. Thank you for spreading essential awareness! #VEDSActionMonth24 #VEDS #VEDSAwareness

Jenny wants her daughter Natalie's legacy to be one of saving and improving other kids' lives. Can you honor Natalie's legacy -- or a legacy that's special to you -- with a gift today? Donate now: https://lnkd.in/dTsk4Nah 81 cents of every dollar we raise goes directly to our mission! #VEDSDayofGiving2024 #VEDS

Today is VEDS Day of Giving. Donate now https://bit.ly/VEDS24Gifts. Support the education, events, Conferences, webinars, and camps you love! Thank you for generously powering the Movement's mission! Make your gift and share this giving opportunity with everyone you know. #VEDS

Congratulations and thanks to the Maher family for spreading awareness through a cover story in Garden City Living in NY. Knowledge is power! #Marfan #MarfanSyndrome https://lnkd.in/d4iqQtAv

Take this super quick 10-question survey about our social media. We want to continue to enhance what we offer digitally so that you have the best experience possible! Thank you for your time. https://lnkd.in/eAtVZbK7

If you or someone you know cannot travel to Puerto Rico, but would find it helpful to attend our October 26th Spanish-language symposium through a virtual session, please sign up or share this opportunity. https://ow.ly/X73l50TLb4y Thank you! #Marfan #LoesyDietz #VEDS #SticklerSyndrome Si usted o alguien que conoce no puede viajar a Puerto Rico, pero le resultaría útil asistir a nuestro simposio en español del 26 de octubre a través de una sesión virtual, por favor regístrese o comparta esta oportunidad. https://ow.ly/X73l50TLb4y ¡Gracias! #Marfan #LoesyDietz #VEDS #SticklerSyndrome