Family Resources
ZTTK Syndrome Awareness
Gene Review is a trusted clinical reference for geneticists worldwide. This resource provides a clinical overview of ZTTK Syndrome diagnosis and care.
Standard of Care Considerations for ZTTK Syndrome Letter Format / Standard of Care Considerations ZTTK Syndrome A1 Format
The Standard of Care Considerations is a guide co-developed by parents, therapists, and medical professionals that outlines the suggested practices for supporting, treating, and managing ZTTK Syndrome.
Educational Guide and Story Book
A comprehensive and family-friendly guide designed to help newly diagnosed families understand ZTTK Syndrome and related medical needs.
Support and Resource Organizations
A free and confidential family support organization that is designed to offer emotional and practical support for parents, or caregivers, every step of the journey. “Whether that is learning more about a child neurology disorder, connecting to disease-specific organizations, talking to another parent, learning about clinical trials, navigating transitioning from child to adult healthcare, getting digital resources such as computers, finding food assistance programs, navigating insurance questions, preparing for your first visit with a child neurologist, and more.”
United Us is a service that refers families to state specific resources ranging from food/housing assistance to medical support. ZTTK SON-Shine Foundation currently has a subscription for this service. To access the ZTTK SON-Shine Foundation subscription click the button below and fill out the form.
Courageous Parents Network (CPN)
CPN “presents educational resources in an array of formats—video, audio story, downloadable guides, blogs, events and more—with a singular goal: to give parents confidence that they are being the best possible advocate for their child”.
Make-A- Wish Foundation / Make-A-Wish International
“Make-A-Wish Foundation is a non profit that grants to children ages 2 ½ to 18 years of age, aiming to provide hope, strength, and joy. Wishes range from travel and room makeovers to shopping sprees, aiming to improve mental and physical well-being during medical treatment”.
Hidden Disability Sunflower (HDS)
HDS provides a universally recognizable, free lanyard ( green with yellow sunflowers) that indicates the wearer has non-visible disabilities and may require assistance, patience or understanding when using transport.
Rare Disability Podcasts
“Join us for inspiring stories and news about what is being done to help people with rare diseases live their fullest and best lives. Find out what is happening on the frontlines of care, advocacy, research, and science.”
Effie Parks hosts this podcast which is dedicated to “fostering a more informed and empathetic environment for those impacted by rare disease”.
“A long-running, award-winning, weekly podcast by journalist Daniel Levine, focusing on news, policy, and research”.
“A series from UMass Chan Medical School highlighting the journey of families and their collaboration with researchers to find new treatments”