Welcome to all of our newly-diagnosed families! We are sure you have many questions regarding 1p36 Deletion Syndrome and the 1p36 Deletion Support Awareness community is here to help!
First of all, know that you are not alone. We are a large network of families and friends who have loved ones with 1p36 Deletion Syndrome and we are here to help you. If you haven’t already, please ask to join our Facebook forum where you can connect with other families. https://www.facebook.com/groups/1p36dsa .
You will want to know some basic information about your child’s diagnosis and you will want to know what doctors you need to see, etc. That information can be found on our website, under “About 1p36 Deletion Syndrome.” There are also journal articles under “Resources” that you can share with your child’s physician. If you have a specific question, you can always use the “Contact Us” blue button on our website to contact the organization and be directed to more information.
We sponsor an annual national conference where 1p36 families get together to learn more about the syndrome and to just spend time with people who “get it.” This year’s conference will be held August 3-5 in Baltimore. Check back on our website under “For Families—Conferences” for more information as it becomes available. We’d love to meet you and your 1p36 child! The cost is usually modest and we promise you will have an amazing time!
We also have a 1p36 DSA store on our website where you can purchase items with our logo. This helps both spread awareness and raise funds, as all profits go to 1p36DSA.
Remember—every 1p36 child is unique. Not every child has every symptom. But chances are good that someone in our community has similar experiences to you/your child and can help or just provide a listening ear. Again, welcome! Let us know how we can help you!