A New Resource Hub for Patients & Caregivers
Building a solution for healthcare navigation fragmentation
This Giving Tuesday, I’m thrilled to announce the launch of the Spooniverse Directory — a comprehensive, searchable resource hub for patients, caregivers, and healthcare advocates.
Living with chronic illness often feels like having a second job — one where you're constantly searching for reliable information, support groups, and healthcare resources. We've all been there, bookmarking countless websites, taking screenshots, and trying to remember where we found that one helpful article.
What is the Spooniverse Directory?
The Spooniverse Directory is a searchable directory of healthcare resources, created by patients who understand the challenges of complex chronic health conditions. Think of it as your personal healthcare library, organizing everything from support groups to clinical trials in one easy-to-navigate space.
The name “spooniverse” is a portmanteau of spoonie, widely-used in chronic illness communities to represent energy management, and universe, the comprehensive digital landscape for healthcare navigation.
📁 Directory Categories & Content
The directory currently organizes over 500 curated resources into 16 intuitive categories, including:
Advocacy & Research Organizations
Leading patient advocacy groups
Research institutions and foundations
Policy and legislative resources
Clinical Trials
Active recruitment listings
Clinical trial matching services
Research participation opportunities
Clinics & Providers
Specialized treatment centers
Telehealth options
Interdisciplinary care programs
Disability & Financial Aid
Insurance navigation guides
Disability application assistance
Medical cost management programs
Patient Communities
Online support groups
Peer mentoring programs
Community forums
The idea for this directory came from personal struggles and countless conversations with community members. We kept hearing the same thing: "I wish there was one place where I could find everything I need."
The scattered nature of healthcare resources isn't just frustrating — it's a barrier to care. When you're dealing with brain fog, fatigue, or just the overwhelming nature of chronic illness, the last thing you need is to spend hours searching for help.
"I found my current doctor, support group, and disability lawyer all through the directory's beta version. It saved me months of searching.” — Sarah K., Beta Tester
➡️ How It Works
Visit the resource hub at spooniverse.directory
Search for what you need or browse by category
Click each card to uncover detailed information about each resource
Expand images and access PDFs directly through the platform
No account needed. No complicated sign-ups. No paywalls. Just straightforward help when you need it.
✨ Key Features
Smart Search: Quickly find exactly what you need
Visual Interface: Clear, accessible design for easy navigation
Detailed Information: Get comprehensive details about each resource
Mobile-Friendly: Access the directory from any device
Category Filters: Browse resources by type
Category filters are color-coded into the following groups:
CORE MEDICAL (Blues)
1. Clinics & Providers
2. Diagnostics
3. Treatments
4. Clinical Trials
SUPPORT & GUIDANCE (Purples):
5. Disability & Financial Aid
6. Patient Communities
7. Advocacy & Research Organizations
EDUCATIONAL CONTENT (Warm colors):
8. Books
9. Research Summaries
10. Documentaries & Films
11. Podcasts & YouTube Channels
12. Blogs / Newsletters / Publications
13. Explainers / Guides / Visuals
TOOLS & EVENTS (Greens):
14. Digital Health / Symptom Tracking
15. Data Dashboards
16. Conferences / Presentations / Symposiums
Support Our Mission 💝
The Spooniverse Directory is a labor of love, created by patients for patients. This Giving Tuesday, we invite you to:
1. Share the directory with anyone who might benefit
2. Share resources you have found helpful
3. Support our work through a donation
Help us ensure that no one has to navigate chronic illness alone. Every contribution, whether through sharing, submitting resources, or donating, makes a meaningful impact. Every donation, no matter the size, helps us maintain and expand this vital resource for our community.
🚀 Get Started
Visit the Spooniverse Directory today!
If the directory helps you find something valuable, let us know. Your stories and suggestions fuel this work and help us understand what matters most to patients.
We'll be regularly updating the directory with new resources and features, including translation into other languages, incorporation of more international resources, and inclusion of additional medical conditions.
With hope and determination,
The Spooniverse Team
Wow, this is an excellent collation of resources. Thank you so much!
This is amazing. Thank you 😊