Provides resources and support for families affected by an omphalocele diagnosis. They offer virtual support groups for parents and an online community map to help families connect and know they’re not alone. They also host educational webinars and mail educational materials to families or medical professionals for free. The Car Seat Pass Down Program provides Jefferson Car Seats and Hope Car Beds for families who otherwise could not afford these medical devices. Families can also apply for O Warrior Grants for financial assistance to help with costs associated with medical care, long distance travel, or special living arrangements. The O Angel Program offers free keepsakes for mothers of who have lost a child to remember their O Angel babies. Visit the website for program applications or to contact the organization directly.
owarrior.org
Provides medical grants for families to pay for healthcare services related to a major medical condition that are not covered by their family’s insurance plan. Children must be 16 years old or younger, be a U.S. citizen, and have coverage through a commercial health plan to qualify for a grant. Families must meet income eligibility requirements. Applications must be submitted on a computer, not phone or tablet. Visit the website for a full list of requirements and for application instructions.
(855) 698-4223
uhccf.org
Helps individuals and families impacted by rare diseases and provides information in English and Spanish. Use the State Resource Center to find free and low-cost programs by state. They have several financial assistance programs to help cover costs of life-saving medication, caregiver aid or respite care, and educational support. The NORD Support Helpline offers help accessing programs from an Information and Resource Services team member. They also have information on joining a clinical trial or study.
NORD Support Helpline: (800) 999-6673
Español: (844) 259-7178
rarediseases.org
Works with patients and healthcare providers to help improve access to genetic services for medically underserved populations and those with genetic conditions. Use the Find a Genetic Service page on their website to search for care providers by zip code. The Journey Through Diagnosis website and app provides a detailed guide for families on coping with emotions related to a genetic diagnosis, accessing medical care and support services, navigating insurance, and more.
journey.midwestgenetics.org
The websites below offer helpful health information from reputable sources on topics such as healthy lifestyle, diseases, prevention, and treatment.
Offers educational materials for parents and caregivers from pediatric experts. Helping Hands are easy-to-read articles on topics including health conditions, caring for medical equipment at home, behavior support, medical tests, and caring for newborns. Visit the Conditions We Treat page for even more information on health conditions A-Z and how to get treatment.
Helping Hands: nationwidechildrens.org/helping-hands
Conditions We Treat: nationwidechildrens.org/conditions