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Firefly Platform Overview
Reducing the burden of care for families of children with complex medical needs
A child with complex medical needs might see 15+ specialists, take multiple medications,
and depend on coordination across dozens of providers and agencies.
Their family carries a heavy load — and even with great support, there's a lot to keep track of.
Firefly is a family app, first. It gives parents one place to organize their child's care,
connect with their support team, and access the resources they need — from any device, at any hour.
PPCC is building Firefly to help reduce the burden of care for the families they serve.
What Families See
These are the actual screens families use. Firefly is designed so a tired parent on their phone at 11pm can get what they need without thinking.
Family Dashboard
Everything in one place — daily check-in, a quick way to log what's happening today, and one-tap access to chat, community, resources, and notifications.
Family & Care Plan
See your children's profiles, your assigned care professional, and your Digital Care Plan — with clear progress on which templates still need attention.
Child Profile & Emergency Info
Each child has their own profile — emergency contacts with one-tap calling, rescue medications with dosing instructions, allergies, blood type, and specialists.
Resource Library
Curated guides, forms, and information organized into clear categories — everything from care plan templates to helpful organizations and upcoming events.
Caregiver Corner
A safe, moderated space for families to connect — join community discussions, ask questions, and support each other. Real communities, real conversations.
Resource Map
An interactive map of 160+ Pennsylvania services across 8 categories — basic needs, education, home care, medical services, and more. Tap any pin for details and a direct phone number.
Share with Anyone
One tap to share your child's care plan — send a link, download a PDF, or email it directly to a specialist, school, or ER.
Program Dashboard
PPCC leadership can see the big picture — families served, LANTERN activity coverage, milestones, referrals, and outcomes across the whole program.
What Firefly Does
Three layers working together — families organize their care, navigators provide support, and programs see the results.
Built & Ready
Coming Soon
32 Built
14 Coming Soon
01
What Families Can Do
Parents and caregivers get tools to organize their child's care, connect with their support team,
and access the resources they need — all in one place, from any device.
Who uses this: Parents, caregivers, family members
Organize
Digital Care Plan Book
39 fillable PPCC templates — profile, log, and schedule forms for your child
Daily Check-In
Quick daily update on your child's status — "all the same today" or log changes
Share & Export
Send care plans to any doctor or specialist as a PDF or secure link
Child Profiles
Medications, specialists, allergies, and emergency info for each child
Emergency Quick-Access
One-tap card with critical info — meds, specialists, and phone numbers
Per-Child Care Plans
Separate care plan for each child in multi-child families
Per-Child Sharing
Share by child name — so the right information goes to the right people
SOON
Connect
Chat with PPCC
Direct messaging with your care team — ask questions, share updates
Family Group Chat
Group messaging so everyone in the family stays on the same page
Caregiver Corner
Community forums — connect with other families, share tips, ask for advice
Notifications
In-app and email alerts so you never miss a message or update
Report a Concern
Flag an issue directly to your care team and track the response
SOON
Access
Resource Library
Curated guides, forms, and information organized by category
Resource Map
Interactive map of local services — tap any pin for details and a phone number
Calendar
PPCC events, appointments, and important dates in one view
Guided Welcome Tour
"Fly with Firefly" — a friendly walkthrough when you first sign in
Self-Service Signup
Families can join on their own — no staff needed to create an account
SOON
View-Only Access
Grandparents or extended family can view the care plan without editing
SOON
Families' needs and daily updates are visible to their care team
02
What Navigators & Coordinators Can Do
Care navigators, coaches, and supports coordinators get tools designed to reduce paperwork and surface what matters — so they spend their time on families, not administration.
Who uses this: Care navigators, coaches, supports coordinators — anyone whose job is helping families
Support Families
Family Management
See all your assigned families, their members, and their care plan progress
Your metrics — families helped, issues resolved, outcomes achieved
SOON
Outcome Tracking
Tag real results — ED visits prevented, nursing hours secured, equipment resolved
SOON
LANTERN Framework
ListenAdvocateNavigateTailorEducateReferNetwork
Ready When Your Team Is
These tools are built and tested. When any organization — a PCCRC, a children's hospital,
a Family-to-Family center, a county supports coordination office — is ready to bring their
staff onto Firefly, everything they need is here. The next step is having the right people in the seats.
Staff activity and family progress flow into program-level reporting
03
What Programs Can See
Program leaders configure the platform, manage users, and see the data that matters — engagement, outcomes, and the information needed to sustain and grow the program.
Who uses this: Program directors, administrators, PPCC leadership
Manage
Users & Roles
Create accounts and assign roles — Admin, Navigator, or Family Member
Family Setup
Create families, add members, and assign navigators
Template Builder
Create custom forms, resource guides, and care plan templates
E-Signatures
Families can sign consent forms and documents digitally
Announcements
Send messages to all families at once
Understand
Analytics Dashboard
See how families are engaging — logins, forms completed, messages sent
LANTERN Activity
Track which LANTERN care actions are happening across the program
Activity Log
Complete record of everything that happens on the platform
Outcome Reports
Aggregate impact data — formatted for grant reports and funder conversations
SOON
Customize
Program Branding
Your logo, your colors, your terminology — Firefly looks like your program
Guided Onboarding
Welcome tours tailored to each role — families, navigators, admins
Feature Controls
Turn features on or off as your program grows — start simple, add over time
Auto-Assign Templates
New families automatically get all the right forms on day one
SOON
A Day in the Life
What it actually looks like when a family and their program team use Firefly on a typical day.
A Family's Day
7:00 AM
Quick check-in — child slept poorly, note a new medication side effect in the Daily Check-In
9:30 AM
Doctor's appointment — open the Emergency Quick-Access card in the waiting room to share meds and specialist list
11:00 AM
Fill out a form — update the Medication Schedule template while it's fresh in your mind
2:00 PM
Message PPCC — ask your team about a therapy referral your doctor mentioned
7:30 PM
Caregiver Corner — another parent posted about the same medication side effect. Reply with what your doctor said today.
9:00 PM
Share care plan — email the updated care plan PDF to the school nurse before tomorrow
A Program Leader's Week
MON
Check the dashboard — 82% of families logged in this week, 12 new daily check-ins, 8 forms completed
TUE
Add 3 new families — create accounts, set up their care plans, send welcome invitations
WED
Build a new template — navigators asked for a medication tracking form. Create it and assign to all families.
THU
Review LANTERN activity — see which care actions navigators are performing most, identify training needs
FRI
Pull a report — families served, engagement rates, and encounter data ready for the quarterly funder update
Getting Pennsylvania Right
PPCC is preparing to bring Firefly to Pennsylvania families. The focus is simple: get it right here first.
What We're Building
When Firefly launches with PPCC, families will be able to organize their child's entire care plan in one place,
message their PPCC team, find local resources on an interactive map, and connect with other families
in the Caregiver Corner. Everything is designed for a phone — because that's what parents reach for
at the doctor's office, at the bedside, or on the couch after the kids are asleep.
Based on what families and the PPCC team are telling us, these are the next improvements headed to the platform.
Photos & Video on Logs
Parents can attach photos or video to medical log entries — so when a doctor asks "what did the seizure look like?", you have it.
Medication Reminders
Parent-controlled reminders for medications, appointments, and care tasks. You set them up. You control the schedule. The system never sends anything unsolicited.
Resource Health Checks
Automatic detection of broken links and outdated information in the Resource Library — so families never hit a dead end.
A Platform for Every Coalition
Once Firefly is helping Pennsylvania families, PPCC can bring it to every organization in their network.
From PA to a National Network
Firefly is PPCC's platform. The plan is to get it right for Pennsylvania families first — and once
it's helping here, PPCC can bring it to partner organizations across the country: coalitions,
children's hospitals, Family-to-Family centers, county agencies, and supports coordination offices.
Each organization would get their own version, tailored to their families. All connected through PPCC's network.
PA
Pennsylvania
PPCC — building now, launching soon
CT
Connecticut
PPCC-CT — existing PPCC partner since 2023
CA
California
CHPCC — Children's Hospice & Palliative Care Coalition
OH
Ohio
OPPEN — Nationwide Children's network
MI
Michigan
CPCCM — Children's Palliative Care Coalition of Michigan
+
And Beyond
27+ state coalitions, 59 Family-to-Family centers
What Each Coalition Gets
Every coalition's version of Firefly is their own — customized for the families they serve, the resources available in their state, and the funders and programs they work with.
Their Own Brand
Their logo and colors
Their program name on every screen
Their terminology — navigator, coach, coordinator, case manager
Their login page with their imagery
Their Own Content
State-specific resource library
Local services on the resource map
Custom templates for their care model
Community forums for their families
Their Own Data
Separate database — no data mixing
Their funders' reporting format
Their population focus and categories
Their outcomes tracked their way
PPCC's Partner Network
These are the organizations PPCC already partners with across the country. Each one serves families of children
with complex medical needs in their state. Each one could have their own Firefly — extending the network
PPCC has already built with a shared platform.
Pennsylvania
PPCC
Building Firefly now — first families coming soon
Connecticut
PPCC-CT
Pediatric Palliative Care Coalition of Connecticut
California
CHPCC
Children's Hospice and Palliative Care Coalition
Ohio
OPPEN
Ohio Pediatric Palliative Care and End of Life Network
Michigan
CPCCM
Children's Palliative Care Coalition of Michigan
AK · ID · MT · OR · WA
Northwest PPC Coalition
Five-state regional coalition based at Seattle Children's
LA · MS
Gulf States Consortium
Gulf States Pediatric Palliative Care Consortium
50 States
State-Level Contacts
PPCC maintains connections with coalition contacts in every state
The Connective Tissue
PPCC has already built strong partnerships across a national network of organizations supporting these families.
Firefly can strengthen that network by giving each partner organization a shared platform —
not by making them all the same, but by giving each one a powerful family app that happens to speak the same language.
For Coalitions & Organizations
A ready-made platform instead of starting from scratch. Templates, tools, and a model built with real families in mind. Customize it for your state, your population, and the staff who serve them.
For the National Network
Shared data standards across states. Aggregate outcome data that tells a national story.
The ability to show funders and policymakers what this work looks like at scale.
How It Gets Better
Firefly is designed with self-reinforcing cycles. The more families use it, the more valuable it becomes — for everyone.
Better Care, Faster
When families feel heard, they share more — and care improves
A family reports a concern
Their navigator responds quickly
The issue gets resolved
The family sees it worked — and trusts the process
