Until the Diagnostic Manual for ZTTK Syndrome is published, it is suggested that all newly diagnosed families share the common features of ZTTK Syndrome with their child’s physicians and check-in to be evaluated for these features at least one time by the specialists listed in the “Common Clinical Features of ZTTK Syndrome.” If you are in need of an advocate to help you in coordinating these appointments for your child, please contact any board member or the ZTTK Ambassador for your country of residence. They can assist you in getting started in getting your child fully evaluated and support you as you begin your ZTTK journey.

We also recommend to families to join our parent/ caregiver only Facebook group, ZTTK SON-SHINE gene DE NOVO. If you need help getting linked up to our private, parent/ caregiver only Facebook group, please reach out to our Facebook Group Administrator, Kerry Tirrell at ktirrell@zttksonshinefoundation.org, or any Board member or ZTTK Ambassador. We take the confidentiality and privacy of our patients and their families very seriously, and we take the utmost care to ensure this in our Facebook group to provide a safe and welcoming families no matter where they are from or where they are on their ZTTK journey.

In the future, this website may have an online portal for families that will be private and password protected. We will post more information in the future about this feature.

We also want to remind families that it is important to develop positive relationships with your medical teams, as they will be instrumental in getting your child aligned with services and treatments to help them to live their very best life. However, it sometimes is necessary to be a strong advocate for your child and to help educate your medical, clinical, and educational teams about ZTTK Syndrome. This is especially important until more literature is published and there is more awareness in the medical, clinical, and educational settings about the syndrome. It is sometimes necessary to seek a second opinion, especially from teams that have seen other ZTTK patients. It is also sometimes necessary to have another ZTTK parent help you to advocate. We are happy that you have found us, and we are happy to help you and support you. We are stronger together! So, please know that you are not alone in any of this, and please reach out at any time with questions, concerns, and for help with advocating for your child.