Resources

You’re Not Alone Here

Living with a rare condition can shrink your world. This space is designed to widen it again, with peers who understand, practical tools that save time, and stories that restore confidence. Everything here is organized to be easy to scan and act on, even on hard days.

How to Use This Section

Stories help us move from abstract information to lived wisdom. You’ll find short reads and videos from patients and caregivers covering diagnosis, school and work, navigating flare‑ups, intimacy, travel, and mental health. Each story ends with “What helped me” and resource links so you can try what worked for others.

Community
Connection Features

Private groups by life stage and location so you can meet people who truly relate.
Topic rooms for skincare, mental health, pediatric care, and advocacy.
“Ask a Peer” weekly thread for practical questions and quick tips.
Moderator guidelines to keep the space safe, kind, and useful.