No one should walk this journey alone
Get Involved
Creating a safe space where patients and families are validated, heard, and never alone.
Together, our voices are stronger. When we speak up and share our experiences, we grow our community, raise awareness, and make sure no one living with a rare or chronic illness goes unheard.
Simple ways anyone can help
You don't have to do something big to make a difference.
Follow & share
Follow @rarenotinvisible and share posts so more people feel seen.
Add your voice
Add your voice. Your experience could help someone else feel less alone. Share only what you're comfortable with.
Listen & believe
When someone tells you they're struggling with their health, believe them.
Who can help, and how
We are calling on neighbors, educators, healthcare workers, and local leaders to shift from passive awareness to active, intentional advocacy.
Family & friends
- Offer specific help: "I'm dropping off dinner Tuesday" instead of "let me know if you need anything."
- Go to appointments with them.
- Keep inviting them, even when they have to cancel.
Neighbors
- Offer a ride or pick up groceries.
- Help with yard work, snow, or trash day.
- Check in with a quick text or knock.
Educators
- Be flexible with students and staff living with chronic illness.
- Remember that "invisible" doesn't mean "not real."
- Help classmates and coworkers understand.
Healthcare workers
- Listen fully, and believe your patients.
- Explain things in plain language.
- When you're unsure, refer.
Local leaders
- Make spaces and events accessible.
- Support awareness events in your community.
- Amplify the voices of local families.
Let's connect
Want to partner, help support local families, or learn more about education and advocacy? Reach out.