Awareness & Advocacy
Low-eez-Deets, huh? One of the greatest things we can do for people affected by Loeys-Dietz syndrome is to raise awareness about this incredibly rare and serious connective tissue condition.
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There’s a lot of confusing language around connective tissue disorders, and even more when it comes to Loeys-Dietz syndrome. Genetic counselor, Gretchen MacCarrick, MS, CGC has put together this helpful document that covers common medical terms and phrases.
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March is dedicated to raising awareness about Loeys-Dietz Syndrome. Throughout the month, we focus on educating the public, advocating for critical research, and supporting those affected by LDS. By fostering understanding, promoting early diagnosis, and encouraging medical advancements, we aim to improve outcomes and quality of life for individuals and families impacted by this condition.
Together, we can drive change and raise the critical funds needed to make a lasting difference.
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Join the effort to make a difference! Help raise awareness for Loeys-Dietz Syndrome by asking your state and local government to proclaim March as Loeys-Dietz Awareness Month. This simple action can save lives by promoting early diagnosis, supporting patients and families, and educating healthcare professionals about this rare and serious condition. Together, we can foster understanding, encourage research, and create a more informed and compassionate community. Take action today—your voice matters!
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We love hearing your stories of courage and sharing them with other members of our community so they can be encouraged.