National Organization for Rare Disorders (NORD)
Patient assistance programs and rare-disease grants.
Resources
Things you can use tonight at 2am.
We are building a library of plain-language resources for the rare-disease journey — written by parents and clinicians, in language a tired person can understand.
Treatment guides
Plain-language guides to novel therapies.
We translate the medical language into the words you actually need — so the next conversation with a doctor feels a little less like another country.
- Treatment 14 min read
A parent's guide to gene therapy
What it is, what it isn't, and 7 questions to ask the doctor.
Read guide - Treatment 9 min read
How to read a clinical trial listing
Phases, eligibility, and the words that actually matter.
Read guide - Care kit 6 min read
What to bring to a new specialist
A printable 1-page sheet for the next appointment.
Read guide - Care kit 7 min read
Second opinions without burning bridges
A short script and a longer pep talk.
Read guide - Hard days 5 min read
When the diagnosis is "incompatible"
For the moment someone says the worst thing.
Read guide - Financial 12 min read
Medicaid waivers, in plain English
How to start, who to call, and what to expect.
Read guide
Caregiver toolkit
Printable things that make the day easier.
Free, no sign-up, designed to be photocopied, scuffed, and used.
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Hospital go-bag checklist
Everything you actually need for an unplanned stay — check off what you have, add what you need.
Download (PDF) -
Care binder template
A printable binder structure to keep your child's whole care plan in one place.
Download (PDF) -
Sibling story & activity book
For the brothers and sisters, with love — gentle prompts and space to draw and write.
Download (PDF) -
Grief calendar
A gentle, year-long companion — one small prompt per month. Use it if it helps. Skip any month that doesn't.
Download (PDF) -
Self-care for caregivers
A realistic 5-minute-a-day starting point — one week at a time.
Download (PDF)
Financial aid directory
Help with the cost of caring.
A starting list of organizations that may be able to help with medical bills, equipment, travel, and the things insurance doesn't cover. This is not a complete list — and eligibility varies. We update it regularly.
United Healthcare Children's Foundation
Medical grants for children in family financial need.
Sibling Support Project
Resources and connections for brothers and sisters of children with disabilities.
Family Voices
Family-to-family health information and advocacy.
State Medicaid Waivers (by state)
Home- and community-based services for children with disabilities.
Need help finding the right resource?
Our care guides are happy to walk through it with you.