STARTING WITH PFIC · BUILT FOR RARE FAMILIES

No family should have to solve a rare disease alone.

Rare Hope turns one family’s hard-earned journey into a reusable pathway for the next.

A family-founded navigation project. No forms. No data collection. No medical claims.

1 in 10people in the U.S. lives 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.

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’s journey exposed a painful pattern: families are often left to piece together information, resources, support, and practical next steps while already carrying an overwhelming load.

We believe the lessons earned by one family should become a shortcut for the next. PFIC is our first pathway and proof of concept. The larger mission is a repeatable model that can grow across rare pediatric conditions.

NINA’S STORY

HEAR IT FROM NINA

One family’s journey can become another family’s starting point.

Nina’s founding-family video will appear here. The launch package did not include a video file or link, so this area is intentionally held for her voice.

VIDEO COMING SOON

THE RARE HOPE MISSION

Make the next family’s first steps clearer.

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

01Reduce isolation

02Organize the journey

03Pass hope forward

THE REPEATABLE RARE HOPE PATHWAY

Six steps. Less isolation. Faster connection.

Built to complement—not replace—qualified medical care and established patient organizations.

Understand

Start with clear, authoritative information about the condition and the language families are hearing.

Prepare

Organize questions, records, symptoms, appointments, and decisions so families can advocate more confidently.

Connect

Find patient communities, experienced families, specialists, and organizations that understand the diagnosis.

Access

Locate established support programs, financial assistance, education, and approved family resources.

Live

Surface practical caregiver and quality-of-life resources while separating experience from medical guidance.

Pass it on

Turn what one family learned into hope, visibility, and a clearer starting point for another.

VERIFIED STARTING POINTS

Trusted places to learn, connect, and act.

Rare Hope is not rebuilding resources that already work. Every link below leads directly to PFIC Network, NIH, or FDA resources reviewed for this launch.

PFIC

Understand PFIC

PFIC Network’s overview of this group of rare genetic liver disorders.

PFIC

Patient & parent support

Education, community, support programs, patient stories, and ways to take action.

PFIC

Resources by families

Community-developed questions, practical resources, and lived experience.

PFIC

Explore treatment paths

IMPACT:TEA, a community-built information tool from PFIC families and clinicians.

PFIC

PFIC Patient Registry

Learn how voluntary participation can document needs and support patient-centered research.

RARE DISEASE

Genetic and Rare Diseases Center

NIH information about rare conditions, diagnosis, research, and support organizations.

RARE DISEASE

Rare diseases at NIH

A national overview of rare-disease research and the challenges families face.

RARE DISEASE

Rare diseases at FDA

How the FDA defines rare disease and supports medical-product development.

1 IN 10

Rare is not as rare as it feels.

THE RARE HOPE 1-IN-10 RELAY

Make rare visible. Pass hope forward.

Rare disease touches about 1 in 10 people in the U.S. The relay turns that invisible reality into a visible chain of care.

1
Record
Share a short video naming a rare-disease family, condition, or lesson you want seen.
2
Act
Donate through an official link, share a trusted resource, or amplify a family’s story with permission.
3
Relay
Nominate three people to pass hope forward with #RareHopeRelay.

SUPPORT WITHOUT THE GUESSWORK

Help PFIC families find connection, education, and hope.

Donations go directly to PFIC Network, an established nonprofit supporting families, education, programs, and research. Rare Hope does not collect personal information or handle donated funds.

Donate through PFIC Network ↗See PFIC Network’s impact ↗

MEDICAL CLARITY

Navigation, not medical advice.

Treatment decisions belong with qualified clinicians who know the patient.

FINANCIAL CLARITY

Direct support, clearly labeled.

Rare Hope does not receive donations or handle funds.

RELATIONSHIP CLARITY

Independent and volunteer-led.

Links do not imply formal endorsement or partnership.