Guides, downloads, support groups, government benefits, and more — everything your family needs in one place.
Printable wallet card for emergency services, schools, and caregivers. Fill in, print, and laminate.
Classroom strategies, IEP checklist, and communication tips. Share at IEP meetings and with school staff.
Clinical reference for physicians, nurses, and allied health staff — genetics, system findings, anesthesia alerts.
37-page guide from Virginia Commonwealth University covering genetics, case studies, and development.
22-page UK-based resource covering developmental, behavioral, and educational aspects of CdCS.
Our educational companion site for parents, families, educators, and medical professionals.
A four-year documentary following four children with 5p- Syndrome. Covers prognosis, therapy, and family life.
A screened, private community for families, caregivers, and individuals with 5p- Syndrome. Share experiences, ask questions, and find support.
Follow for news, stories, event announcements, and advocacy updates. Open to everyone interested in 5p- Syndrome awareness.
A private, compassionate space for families who have lost a child or loved one with 5p- Syndrome. Screened for privacy and safety.
A support network specifically for siblings of individuals with 5p- Syndrome — connecting young people who understand the unique sibling experience.
Regional grandparent coordinators in Pennsylvania, Kentucky, and California — with expansion planned nationwide.
Coordinators available to support Spanish-speaking families throughout the US. Recursos disponibles en español.
Navigating the benefits system can be overwhelming. Here are the key programs families of individuals with 5p- Syndrome should know about.
Tax-advantaged savings accounts for qualified disability expenses that protect eligibility for Medicaid and SSI benefits.
Learn more →Cri du Chat Syndrome qualifies for the SSA Compassionate Allowance program, which fast-tracks disability benefit decisions.
Learn more →State-level Katie Beckett Waivers and Kids Waivers provide Medicaid coverage to children based on disability, not family income.
Find your state →Wrightslaw provides plain-language guidance on IDEA, IEPs, and your child's rights in the public school system.
Visit Wrightslaw →Free air transportation to medical appointments for families in financial need across the northeastern US.
Apply →Grants wishes to children with life-threatening conditions, helping create meaningful memories for families.
Learn more →ASL learning resources designed for children with developmental differences. Highly recommended for early communication support.
Resources and community for families navigating G-tube and J-tube feeding — from insertion to transitioning off tube feeding.
Wheelchair-accessible minivan conversions and mobility solutions for families with members who use wheelchairs.
Directory of fully accessible playgrounds across the US where children of all abilities can play together.
AARP, HUD, and HomeAdvisor resources for adapting your home for accessibility and safety as your child grows.
Legal advocacy and protection for people with disabilities — covering education, housing, employment, and healthcare rights.
Our private Facebook group is where the real conversations happen — late-night questions, therapy wins, school frustrations, product recommendations, and the kind of support only people who truly get it can offer.
Membership required. Already a member? Log in for the direct link.
Our regional coordinators are real people who have lived this journey. Reach out — we'll help you find the right resource.
