Welcome. We know that the initial diagnosis of TANGO2 in a loved one brings about a variety of emotions – shock, uncertainty and fear to name a few. You are not alone on this journey though – the TANGO2 Research Foundation, as well as other parents and families, are here to help you along this path. Please read below to see how to get started. We warmly welcome you to our family.
First Things First
- Share the TANGO2 Emergency Room Visit protocol with your child’s doctors.
- Share the NORD TANGO2 Disease Overview and the TANGO2 GeneReviews articles with your child’s doctors
- Illnesses, such as flu or those including vomiting or fever, are primary triggers of serious TANGO2 complications. Insufficient food and/or fluid intake (with or without illness) can also trigger symptoms. If your child is experiencing any of these symptoms, take them to the hospital and present them with TANGO2 Emergency Room Visit protocol PDF (Updateable MS Word Version).
Once you have an Emergency Protocol in place for your loved one and his/her doctors are well informed about TANGO2 and how it affects their patient, we’d love to have you become involved with the TANGO2 Research Foundation as we try to advance vital research around TANGO2.
- Join the TANGO2 Disease Support Group on FaceBook (separate Parent group – great resource)
- Participate in the TANGO2 Study now going on at Baylor/Texas Children’s Hospital in TX – Read Details Here. Participation in this study is critical for advancing knowledge of TANGO2 – Read Why Should I Participate in a Natural History Study?
- Introduce yourselves to the TANGO2 Research Foundation and Volunteer here