Supporting Families + Caregivers
Through Diagnosis
At TBCK Foundation, you are not alone; community is key in supporting families through TBCK diagnoses. Our powerful network of parents, guardians, and caregivers offers grounded encouragement through challenging times and communal celebration during joyous moments.
Support and Resources
Join our community registry and share your story to deepen the connection between families and research for TBCK Syndrome.
Join one of our community events to connect with other families and caregivers.
Follow us on social media for more information on in-person and virtual events and gatherings.
TBCK Community Newsletters
Resources of Support
for TBCK Patients + Caregivers
Here is a compilation of different resources to support your family. Please always reach out to us if you are in need of additional support. info@tbckfoundation.org
Resources We Love
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Kids Waiver - A compilation of information about Medicaid waivers, Katie Beckett or TEFRA programs, and other programs for children with disabilities or medical needs. Children with TBCK Syndrome, often qualify for these services, but it is at the determination of the state level. This should be a FIRST stop for all diagnosed patients.
Children’s Hospital of Philadelphia - If you haven’t already, please get in touch with the leading TBCK Syndrome researchers in the world at CHOP. tbckresearch@email.chop.edu
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Miracle Flights - Provides free domestic or international travel to U.S. facilities for medical treatment, second opinions, and follow-up for patients in need.
Angel Flights - Arranges free air transportation for any legitimate, charitable, medically related need. This service is available to individuals, and healthcare organizations.
Healthwell Foundation - Pediatric Assistance Fund
Julias Wings - Provides assistance to families of children with the life threatening hematological disease
Children’s Flight of Hope - Supports families for travel.
US Department of Health and Human Services - Offers state-by-state financial assistance programs
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Eva’s Butterfly Wishes Scholarship - Grant to provide a child under 5 who has been diagnosed with a life-limiting rare disease or disorder a non-medical experience to enhance the child's quality of life.
NORD Caregiver Respite Program - Provides financial assistance to enable the caregiver a break to attend a conference, event or simply have an afternoon or evening away from caregiving. Financial assistance will be granted up to $800 annually for those who qualify.
NORD MedAlert Assistance Program - Provides MedicAlert products and services to eligible individuals in the rare disease community. If someone with a rare disease can’t speak for themselves in an emergency, MedicAlert can be their voice in providing important and potentially life-saving information. The program provides eligible individuals with a MedicAlert product and 3-years of membership.
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Social media has its downfalls, but it is changing all the rules for how communities like ours come together. Check out some of these resources to get connected to TBCK Families, rare disease families, and the disability community.
TBCK Parent Group - Open to all, our Facebook group is our primary location of community in order to reach patients located all over the world. Join today to get connected to other families.
Amanda Griffith-Atkins - Licensed therapist providing a space for parents of disabled kids to be held and validated.
Disability Reframed - Educational and advocacy to help change the perspectives around disability.
Once Upon A Gene Podcast - Hosted by a rare mom, this podcast hosts rare disease leaders, doctors, and advocates for everyone in the rare disease space.
The_Rare_Life Podcast - Hosted by a rare mom, this is another awesome podcast that hosts all kinds of incredible guests in the ultimate solidarity for parents of children with rare conditions.
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The Rare Genome Project helps connect families to genetic testing resources. Clinician Referral Form
The TBCK Foundation is a registered 501(c)(3) charity organization. Please note that we provide this information for the benefit of TBCK syndrome community. We are not a medical provider or health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments. Patients must rely on individualized medical advising from qualified health care professionals before seeking any information related to their particular diagnosis, cure, or treatment of a condition or disorder. The TBCK Foundation is recognized as a 501(c)3 non-profit corporation. EIN 83-3095299.
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