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 Roundtable: Click here to register
A Rare Roundtable Back to School Discussion with Nichelle Nicole, Founder & Executive Director of Favor Foundation Inc.
Wednesday, September 23, 2026 | 7:30 pm EDT
Zoom | registration required
About This Event
Back to school season brings a whole new set of challenges for families raising a child with a rare disease, from navigating IEPs and 504 plans to advocating for the right accommodations in the classroom. Ward’s Foundation invites you to pull up a chair at our next Rare Roundtable, where we sit down with Nichelle Nicole, founder of Favor Foundation, for an honest conversation about school navigation and special education advocacy. After walking this road herself with her own son, Nichelle built Favor Foundation to help families feel less alone in the process, and she’s bringing that hands-on experience straight to you.
What We’ll Cover
IEP & 504 Basics: What’s the difference, what are your rights, and how do you prepare for a meeting that actually gets your child what they need?
Live Q&A with Nichelle: Bring your questions! This is your chance to ask an experienced advocate anything about navigating school systems in an open, judgment-free conversation.
Who Should Attend?
This session is designed for caregivers and families of children with rare diseases who are heading into a new school year. No prior knowledge of special education law needed. All are welcome.
Have a Question for Nichelle
Submit your questions at registration and help us shape the conversation.
Hosted by Ward’s Foundation | Facilitated by Angel Green, MSW, LCSWA
Koolulam presented by Musicland Gift Foundation: Click here to register
Saturday, September 26, 2026 | 7:30 pm EDT
Knight Theater | Charlotte, NC
About This Event
Thanks to the generosity of Musicland Gift Foundation donors, we have complimentary tickets for our rare disease families to experience the global sensation, Koolulam! Koolulam is an immersive musical experience where people come together to learn and perform a song as one. We’re grateful for this opportunity for our families to enjoy time together and connect with the community through music. Presented by Musicland Gift Foundation, this event benefits the Supportive Oncology Department at Atrium Health Levine Cancer.