Community · Family Resources
Family Resources
A gathered set of guides, organizations, and stories — chosen by ZTTK families, for ZTTK families. Wherever you are on this journey, you don’t have to find your way alone.
ZTTK Syndrome Awareness
Trusted clinical references and family-friendly guides to help you understand ZTTK syndrome and care for your child.
ZTTK Syndrome GeneReview
A trusted clinical reference used by geneticists worldwide, giving a clinical overview of diagnosis and care.
Standard of Care Considerations
Co-developed by parents, therapists, and medical professionals — suggested practices for the treatment and management of ZTTK syndrome.
Educational Guide & Story Book
A comprehensive, family-friendly guide that helps newly diagnosed families understand the condition and its medical needs.
Support & Resource Organizations
Organizations that walk alongside families — for emotional support, practical help, and connection.
DEE-P Connections
A partner organization offering a vast resource library, webinars, and strategies to improve quality of life for families facing multiple health concerns. DEE-P is a global network, and their website includes translation.
Connected Care Network
A free, confidential family-support organization offering disease education, parent connections, clinical-trial information, healthcare-transition guidance, and assistance programs.
Unite Us
State-specific resources for food, housing, and medical support. You can subscribe through the ZTTK SON-Shine Foundation to get connected.
Courageous Parents Network
Educational resources in many formats — video, audio stories, downloadable guides, blogs, and events — for families caring for seriously ill children.
Make-A-Wish Foundation
Grants wishes for children ages 2½ to 18 — from travel to room makeovers — bringing hope and strength to families.
Hidden Disabilities Sunflower
A free green-and-sunflower lanyard that quietly signals a non-visible disability, so others know to offer a little extra help, understanding, or patience.
Rare Disability Podcasts
Voices from the wider rare-disease community — stories, news, and the reminder that you are not alone.
NORDpod
National Organization for Rare Disorders
Inspiring stories and news about helping people with rare diseases live their fullest, best lives.
Once Upon a Gene
Effie Parks
A podcast dedicated to fostering a more informed and empathetic environment for the rare-disease community.
RAREcast
Daniel Levine
An award-winning weekly podcast covering rare-disease news, policy, and research.
Rare Diseases, Real Stories
UMass Chan Medical School
A series highlighting the journeys of families and their collaboration with researchers.
Can’t find what you need?
Reach out — a real person from the ZTTK community will help point you in the right direction.
The information on this site is not, and is not intended to be, medical advice. Always consult your child’s care team about diagnosis and treatment.