A CLEARER STARTING POINT FOR RARE-DISEASE FAMILIES

No family should have to solve a rare disease alone.

When a rare diagnosis changes everything, one clear next step—and the right resources within reach—can bring hope back into view.

Watch Nina’s story Find where you are

A joyful parent and child sharing a warm moment in morning light

1 in 10people in the U.S. live with a rare disease↗10,000+rare diseases are estimated to exist↗Mostrare diseases have no FDA-approved treatment↗

Tap any fact to view its NIH or FDA source.

“To save one child is to save an entire universe.”
Adapted from Mishnah Sanhedrin 4:5

NINA’S FOUNDING-FAMILY STORY

Families become experts the hardest possible way.

Rare Hope began with Nina, a mother whose child lives with PFIC—a group of rare genetic liver disorders.

Her family was left to piece together information, resources, support, and practical next steps while already carrying an overwhelming load.

Rare Hope grows from one simple belief: what one family learns through its hardest chapters should become a clearer starting point for the next.

MEET NINA · RARE HOPE FOUNDER

Why one family’s story became Rare Hope.

Hear the story behind the project and the mission to make rare-disease navigation clearer, more connected, and more human.

Rare Connection podcast cover art featuring a zebra ribbon, connection, education, and clinical trials

FEATURED RESOURCE · HOSTED BY JOANNA BALL

Rare stories deserve to be heard everywhere.

Rare Connection is more than a podcast. Joanna brings patients, caregivers, clinicians, researchers, and advocates together—and helps people find communities, organizations, research, and clinical-trial information when they do not know where to turn.

85episodes

100countries reached

10international episodes

Season 7now sharing rare voices

“Nobody is alone, no matter how rare their disease is.”

Meet Joanna & Rare Connection Apple Podcasts ↗Spotify ↗Official site ↗

Rare Connection is an independent external resource. Rare Hope Project is grateful to amplify Joanna’s work.

Young musicians singing and playing instruments together at a MusicOne performance

NEW COMMUNITY CONNECTION · MUSICONE.ORG

Music can become a place to belong.

Deborah Barsotti, MusicOne’s Programs Director, helps build experiences where underserved young people can grow through music, emotional support, education, and creative community.

Rare Hope and MusicOne share meaningful ground: reducing isolation, helping young people feel seen, and creating pathways toward confidence, expression, and connection.

Meet Deborah & MusicOne Visit MusicOne.org ↗

This is a new community connection. We are amplifying MusicOne’s independent work while exploring where our missions may connect.

Orange, purple, and gold wing-shaped painting created by Nina’s son

A RARE HOPE STORY

God’s Trust Gives You Wings

In one of Nina’s darkest moments, a painting by her son and one simple message gave her hope and trust back.

Read Nina’s story

INTERACTIVE PROTOTYPE

Six steps instead of a thousand open tabs.

A mobile-first companion designed to help rare-disease families organize the journey, find trusted starting points, and feel less alone.

Keep it together — records, medications, symptoms, appointments, and questions.
Find trusted places — direct routes to established patient organizations, NIH, and FDA resources.
Follow the pathway — one clear next step at a time.

Explore the Rare Hope app See the full family pathway →

RARE HOPE

YOUR PATHWAY

You’re further along than you think.

33%

Step 3 · ConnectPick up where you left off →

Log a symptomPrep for a visitOpen my binder

Prototype: sample content for review. Nothing entered is collected, stored, or sent. Educational navigation only—not medical advice.

THE RARE HOPE MISSION

No family should have to start from zero.

Rare Hope brings family-earned perspective, trusted information, and direct routes to established organizations into one compassionate starting place.

01Reduce isolation

02Make the next step clearer

03Bring hope back into view

PASS THE HOPE

One simple action can reach the next family.

Watch Nina’s story. Share Rare Hope. Listen to a rare voice. You do not need to solve everything to help someone feel less alone.

Share Rare Hope Follow on Instagram

MEDICAL CLARITY

Navigation, not medical advice.

Treatment decisions belong with qualified clinicians who know the patient.

CLEAR BOUNDARIES

Education and connection.

Rare Hope organizes starting points without replacing qualified care.

RELATIONSHIP CLARITY

Independent and volunteer-led.

Links do not imply formal endorsement or partnership.