Crisis Navigation
You never expect to hear the words, “Your child has a rare disease.” Fear, uncertainty, and questions flood your mind—What does this mean? How will we get through this? Where do we even start? It’s overwhelming, emotional, and isolating.
Ward’s Foundation Crisis Navigation services provide the support you need when everything feels uncertain. Our licensed clinical social worker helps you process the emotional weight of a diagnosis, offering mental health support and connection to community resources. This service is designed to help families move from the initial crisis to a place of stability and confidence as they navigate the challenges of their child’s diagnosis.
Talking to Your Support Circle
Simple starting points for sharing the news.
❏ Decide how much detail feels right to share for now
❑ Pick one person to help spread updates, so you’re not repeating yourself
❑ Remember, it’s okay to say “I don’t have all the answers yet”
❏ Use simple, honest, age-appropriate words
❑ Let them know their feelings, worry, jealousy, confusion, are all okay
❑ Give them a way to ask questions as they come up, not just once
❏ Share what you know and be clear about what’s still unfolding
❑ Let them know how they can help, specific tasks are easier than
❑ Set expectations for how and when you’ll share updates “anything you need”
❏ Loop in one contact (teacher, HR, supervisor) rather than everyone at once
❑ Keep the first message short, details can follow later
Sample note: “Our family is managing a new medical diagnosis and may need some flexibility over the coming weeks. I’ll keep you updated as we learn more.”
First Days After Diagnosis
A checklist for the first week, one step at a time.
❏ Give yourself permission to pause and feel whatever comes up
❑ Save the contact info for a social worker or care coordinator, if you have one:
❑ Write down your questions and reactions before they slip away (space below)
❑ Ask your medical team who your main point of contact will be going forward
❏ Confirm any follow-up appointments and who will go with you
❑ Identify one person who can help with practical things (rides, meals, other kids)
❑ Start a simple folder, paper or digital, for records and paperwork
❑ Write down questions for your care team or care coordinator:
❏ Researching every detail right away
❑ Making long-term decisions
❑ Telling everyone at once, it’s okay to share on your own timeline
You don’t have to figure everything out today, and you don’t have to do it alone. If you don’t already have a social worker or care coordinator, Ward’s Foundation Crisis Navigation program is here to help.
Upcoming Family Events
Community and Connection
A Rare Feature – The Cat in the Hat: Click here to register
An opening-weekend movie experience for Ward’s Foundation families.
Sunday, November 8 at 1:00pm (seating for the movie begins at 12:30pm)
AMC Park Terrace | 4289 Park Road, Charlotte, NC
About This Event
Grab your favorite striped hat and join us for A Rare Feature! We’re taking over the theater for a private showing of the brand-new The Cat in the Hat (just two days after it opens in theaters!) exclusively for our rare disease families. We’ve reserved the entire theater, so you can relax, settle in, and enjoy the show together in a space where everyone gets it. Wiggles, snack breaks, and trips in and out are all welcome. The movie will be shown with open captions, so captions will appear right on the screen for everyone to follow along.
Snacks are on us! Kids can choose a Kids Pack with a popcorn, drink, and gummy candy, and adults can choose a popcorn and drink combo.
Space is LIMITED and registration is first come, first served, so save your seats soon. When you register, just let us know how many Kids Packs and adult combos your family would like, so we can have them ready for you.
We can’t wait to see you at the movies!
Who Should Attend?
Families of children with rare diseases (0-21 years old).
Have a Question?
Please email programs@wardsfoundation.com with any questions.