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.

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.

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.

A RARE HOPE INTRODUCTION

Hope begins when families no longer have to navigate alone.

An introduction to the mission behind Rare Hope: helping families find practical resources, human connection, and a clearer place to begin.

DIRECT, TRACKED SUPPORT

Help PFIC families find connection, education, and hope.

Donations are completed through PFIC Network’s verified Givebutter campaign. PFIC Network and Givebutter process each transaction; Rare Hope does not receive or hold donated funds. Completed gifts through this page are counted in the Rare Hope fundraiser total.

Donate through the Rare Hope fundraiser ↗

QR code for the Rare Hope fundraiser on PFIC Network’s Givebutter campaign

Scan to donateThe fundraiser page shows the current amount raised.See PFIC Network’s impact ↗

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.

MEDICAL CLARITY

Navigation, not medical advice.

Treatment decisions belong with qualified clinicians who know the patient.

FINANCIAL CLARITY

Tracked giving, direct to PFIC Network.

Completed gifts through the Rare Hope fundraiser are counted on its campaign page. Rare Hope does not receive or hold the funds.

RELATIONSHIP CLARITY

Independent and volunteer-led.

Links do not imply formal endorsement or partnership.