Launching the Spooniverse Directory: A Resource Hub for Patients & Caregivers

A potential solution to 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:

1. Advocacy & Research Organizations

   • Leading patient advocacy groups

   • Research institutions and foundations

   • Policy and legislative resources

2. Clinical Trials

   • Active recruitment listings

   • Clinical trial matching services

   • Research participation opportunities

3. Clinics & Providers

   • Specialized treatment centers

   • Telehealth options

   • Interdisciplinary care programs

4. Disability & Financial Aid

   • Insurance navigation guides

   • Disability application assistance

   • Medical cost management programs

5. 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

1. Visit the resource hub at spooniverse.directory

2. Search for what you need or browse by category

3. Click each card to uncover detailed information about each resource

4. 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