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New Awareness Project Guides and Tool Kits

Awareness Saves Lives! Interested in raising awareness in your community but not sure how? Check out our new awareness tool kits. There's a kit for everyone from organizing an awareness table to doing a school focused project or raising awareness among medical professionals. These new guides/tool kits provide step by step information on how to organize these awareness activities and provide you with everything you will need to host a successful awareness event. Visit, click "Get Involved" and join the fight for victory today!

Latest Activity

Beatriz Ferrer is now a member of Connect
8 hours ago
Zeaundra updated their profile
Stacey replied to Kari B's discussion Any other 'non-flexies' out there?
Russell Chaney commented on Russell Chaney's blog post 66 yrs with Marfans


Any other 'non-flexies' out there? 2 Replies

Started by Kari B in Uncategorized. Last reply by Stacey yesterday.

Survey: Have you been Genetic tested or not? 215 Replies

Started by Allison Hoyt in Uncategorized. Last reply by Kari B yesterday.


Started by Kari B in Uncategorized on Sunday.

Blog Posts

66 yrs with Marfans

Posted by Russell Chaney on July 26, 2014 at 12:14pm — 3 Comments

gaining weight

Posted by karen thompson on July 15, 2014 at 9:16am



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