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Navigating a Rare Diagnosis?
We created some easy guides for families navigating a rare genetic diagnosis… to help reduce overwhelm and bring a little more clarity to an already complicated road.
For those who are newly diagnosed, navigating specialists, or trying to understand what support might be available. Download, print, or fill them out digitally before your next appointment. No sign-up required.
Practical Guide
What to Ask Your Geneticist
Diagnosis appointments can feel like drinking from a fire hose. This guide walks you through 9 categories of questions to ask… from understanding the diagnosis and what testing means, to school considerations, long-term outlook, and care coordination.
- Understanding Diagnosis
- What Happens Next
- System Monitoring
- School & Development
- Care Coordination
- Financial Navigation
Clinical Snapshot Worksheet
What to Bring to a New Specialist
Rare conditions are multi-system. A new cardiologist doesn’t automatically know about the ENT concerns. This worksheet helps you organize your child’s full clinical picture by body system so every new provider sees the whole story… not just their piece of it.
- Neurology
- Cardiology
- ENT / Airway
- Endocrine
- Gastrointestinal
- Musculoskeletal
Resource Worksheet
Medicaid & Waiver Navigation Guide
A rare diagnosis does not automatically qualify a child for Medicaid or waiver programs… but many families are eligible and don’t know it. This worksheet walks you through 7 steps from confirming documentation to understanding waitlists and what to do if you’re denied.
- Medicaid Eligibility
- HCBS Waivers
- Katie Beckett
- Documentation
- Waitlists
- If Denied
APPLY FOR SUPPORT
Direct Patient Assistance
You don’t have to figure this out alone.
We know that navigating a rare diagnosis comes with real financial pressure. Rare Genes Movement offers direct patient assistance to help families cover costs related to their child’s care. If you need support, please apply below.
HELP US BUILD WHAT'S NEXT
These resources are for informational and organizational purposes only and do not constitute medical, legal, or financial advice. Medicaid eligibility rules vary by state and change over time. Always consult qualified professionals regarding your child’s specific situation.
