Awareness Month Merch
Show your LDS love all year long with our new 2025 awareness month tees (+ hoodie and tanks!) for adult and youth. Merch can take 2-4 weeks to print and ship, so get your order in soon!
Help us spread Loeys-Dietz syndrome awareness every day in March!
We’re celebrating our 7th year of raising awareness for Loeys-Dietz syndrome (LDS) by declaring March as Loeys-Dietz awareness month! Below are links to check out activities, resources and events hosted by The Marfan Foundation. Click on the links below to jump to that section on this page!
LDS Activity Sheets
We’ve created a series of coloring sheets and a word search to keep the LDS fun going at home. Be sure to post pictures of your final creations and tag #loeysdietz to be featured!
Share on Social Media
Be sure to tag any photos you share with @loeysdietz or #LoeysDietz so we can feature your photos!
GET YOUR FREE LDS sensory STICKER
Simply complete the form and we'll mail you a FREE LDS sensory sticker!
Share our daily awareness posts
Every day in June we will be sharing facts, stories, and lots of other LDS goodness on social media. Simply share these posts to your personal social media networks to help spread awareness!
Start a day of giving fundraiser
Download this graphic and share it with your network to help raise money for Loeys-Dietz syndrome research and programs.
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.
Connect with LDS Community
Whether you’re newly diagnosed with Loeys-Dietz syndrome or are a long-standing member of our community, we have many different ways to connect online and help you navigate your journey with LDS.
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Whether we walk together in person or virtually around our own neighborhoods, we walk to bring awareness and support to the LDSF mission. See where we’ll be next and join Team LDS (or create your own team) at Marfan.org/Walk.
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At the end of March, we’ll share a compiled video of people around the world affected by Loeys-Dietz syndrome. We love hearing your stories of courage and sharing them with other members of our community so they can be encouraged.
Education & Research
Learn more about the physical signs of Loeys-Dietz syndrome and how to manage this rare connective tissue mutation. Education and research are a huge part of our mission and we thank all our community who participate in research to further our knowledge about LDS.
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From personal perspectives to surgery series and medical symposiums, our archive of webinars is filled with resources to help you begin or continue your journey with Loeys-Dietz syndrome.
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There is still much to learn about Loeys-Dietz Syndrome. We hope that you find these articles, fact sheets, and links as a place to start and helpful in your LDS journey.
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Advances in medical and surgical care are continually being made to help decrease complications for those impacted by LDS. Check out our website for the latest medical research and articles being published and shared by healthcare professionals around the world.
Giving & Fundraisers
Help raise funds for education, research, and support initiatives for the Loeys-Dietz Syndrome Foundation so that we can provide more hope and life-saving awareness to families affected by this genetic condition.
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Loeys-Dietz Awareness Day of Giving is on March 12! Help us continue our important work by starting a Facebook Fundraiser and inviting your friends and family to join you, or donating directly online. As a bonus, all donors giving over $50, or signing up as recurring donors, will receive a special gift of LDS goodies!
Donate Now →
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The Marfan Foundation hosts many fundraising events from coast to coast throughout the year to raise awareness of Marfan syndrome and related conditions like Loeys-Dietz syndrome to raise critical funds that support our work. Our events include formal Heartworks Galas, family-friendly Walks for Victory, online cocktail hours, and local events arranged by volunteer leaders. Each and every event is important and helps us further our mission.
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Loeys-Dietz syndrome members have undertaken a wide variety of events from bowling nights to happy hours to bake sales and potlucks. There’s no end to the opportunities and creativity!
A few of our favorite moments from Awareness Month!
Help us provide life-saving resources to families around the globe affected by Loeys-Dietz syndrome.
