How You Can Contribute
Tell Us About Your Loved One
Our Goal is to FIND A CURE
There is no cure or specific treatment for MED13L haploinsufficiency syndrome. Treatment depends on the types and severity of the medical, developmental, and behavioral problems affecting the person with the syndrome and may include heart surgery and therapies such as speech, occupational, and behavioral therapy. [source]
If you need medical advice, you can look for doctors or other healthcare professionals who have experience with this disease. You may find these specialists through advocacy organizations, clinical trials, or articles published in medical journals. You may also want to contact a university or tertiary medical center in your area, because these centers tend to see more complex cases and have the latest technology and treatments. [source]
Support Around the World for
OUR MED13L community is popping up all over the globe! Help support each other no matter the distance between us. Connect with us using our website and also on social media. Follow MED13L Foundation Facebook and Instagram accounts @MED13LFoundation. Another highly suggested Facebook group is “Simons VIP Connect.” You will find inspiring stories, accomplishments, developmental concerns, medical questions, and a lot of useful information on our social media pages.
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