Support for Parents of Children with Noonan Syndrome

Parenting a child with Noonan syndrome comes with many challenges and questions, whether your child had a recent Noonan syndrome diagnosis or has been living with the condition for years. Wherever you are in your journey, we’d like to invite you to join our online support community for parents who have children with NS. In the group you’ll get answers to your questions and find support from other parents who have been in your shoes before. Rare Disease Awareness - A Focus on Noonan Syndrome By being a part of this group and connecting with other parents, you’re able to help those who are struggling with finding a proper diagnosis for their child. In addition, it’s helpful for parents to compare their child’s symptoms to see whether or not something is a symptom of noonan syndrome or related to something else entirely. Our goal is empower parents to build a collective knowledge around Noonan syndrome and speed up the process to diagnosis. Noonan Syndrome Treatments One of the biggest areas of concern that we hear most parents talking about is treatment options. Within this group you’ll be able to share what’s worked for you, find out how others have managed symptoms, and learn more about what’s available. You can talk about topics ranging from learning disabilities that your child is facing, low growth rate, and lymphatic problems. There is no one size fit’s all program, so it’s important to figure out what works best for your child. Parents Helping Parents Being a parent is both challenging and rewarding, and that’s why we’re here. We encourage you to post questions to our community, share your knowledge and get to know families just like yours. There are resources and communities around topics related to Noonan syndrome as well including behavioral issues, IEPs, and congenital heart defects. If you have any questions about participating in the NS group and others please send us an email at