THE FUNDING PROJECT  •  NATIONAL CHILDREN'S FINANCIAL ADVOCACY INITIATIVE
Rare Disease & Complex Medical Needs — Financial Resources
Rare Disease & Complex Medical Needs

A diagnosis may be rare. The financial challenges families face are often shared

Families living with rare disease or complex medical needs may be navigating equipment, therapies, transportation, accessibility, specialized care, travel, insurance limitations, lost income, and other needs surrounding their child's care.

The Funding Project helps parents start with what their child needs, explore possible funding sources, organize important information, and take practical next steps using Tammy's Proven 13-Step Process.

Find Your Starting Point
Where families start

Rare disease can intersect with many different family needs

Families living with rare disease may also be navigating disability, mobility, therapies, equipment, accessibility, specialized care, transportation, NICU experiences, or other complex medical needs.

A family may come to The Funding Project looking for help with one of those specific needs, while rare disease is part of their child's broader medical journey.

Different diagnoses. Many shared financial challenges.

That overlap is why Rare Disease & Complex Medical Needs is an important part of The Funding Project's national work.

Start with what your child needs

You do not have to fit perfectly into one category

Families can begin with the resource area that most closely reflects their child's current journey.

NICU

For families navigating the financial challenges that can begin during a NICU stay and continue long after discharge.

Explore NICU Resources

Disability

For families navigating equipment, therapies, accessibility, transportation, specialized care, and other disability-related needs.

Explore Disability Resources

Childhood Cancer

For families navigating the financial realities surrounding childhood cancer treatment, travel, household needs, specialized support, and care.

Explore Childhood Cancer Resources

Autism

For families navigating therapies, communication, sensory needs, education, safety, specialized services, and other autism-related needs.

Explore Autism Resources
A flexible approach

The categories are starting points, not limits

A baby may begin life in the NICU and later need disability-related equipment.

A child with a rare genetic condition may have mobility, accessibility, therapy, and complex medical needs.

A family may be navigating autism alongside other medical or genetic diagnoses.

Another child's journey may cross several areas over time.

Families can begin wherever the need makes the most sense today.

The Funding Project's Family Resource Library is designed so parents can move between resources as their child's needs change.

Already part of the resources

Rare Disease & Complex Medical Needs is already part of the resources.

Rare Disease & Complex Medical Needs is not being treated as a separate book.

Instead, it is included within The Funding Project's broader Family Resource Library, including dedicated content within the Funding Guides.

This allows families to use the resource area that best matches their child's needs while also recognizing the financial realities that can accompany a rare, genetic, evolving, or medically complex diagnosis.

Tammy's Proven 13-Step Process

One process. Many different family journeys.

A diagnosis may be different.

A child's needs may change.

The organizations or programs a family approaches may change.

The basic process for preparing to seek funding can remain consistent.

Tammy's Proven 13-Step Process helps parents identify the need, organize important information, research possibilities, prepare stronger requests, follow up, and keep moving forward.

Families can use the process whether they are seeking help with equipment, therapies, transportation, accessibility, specialized care, or another essential need.

Our families

Real Families. Different Journeys. Shared Challenges

Through years of working with families facing disability, mobility, and complex medical needs, Tammy began recognizing how often rare disease was also part of the families' stories.

These families knew their children's diagnoses.

What became clearer to Tammy was how strongly rare disease, disability, mobility, complex care, and financial need can overlap.

A family may need an adaptive bike, specialized equipment, therapies, travel for medical care, accessibility support, or another essential resource.

The diagnosis may be different, but many of the financial challenges and questions are shared.

That realization helped shape The Funding Project's Rare Disease & Complex Medical Needs expansion.

Rare Disease + Patient Advocacy Partners

Help Families Find the Financial Resources

Rare disease organizations, patient advocacy groups, children's hospitals, genetics programs, healthcare professionals, family organizations, nonprofits, and community partners can help connect families with The Funding Project's financial advocacy education and Family Resource Library.

Partners can help families find the resource area that best matches their needs while adding financial guidance alongside disease-specific education and support.

Become a Rare Disease Resource Partner
Rare Disease + Complex Care Sponsors

Help Bring Financial Advocacy to More Families.

Biopharma, healthcare, diagnostics, genetics, foundations, and other aligned sponsors can help expand family education, resource distribution, digital access, outreach, and national awareness.

Sponsor support helps The Funding Project reach families whose child's medical journey may be rare, while many of the financial questions they face are shared by families across the country.

Sponsor Rare Disease Family Resources
Donor support

Help more families find a place to begin

Donor support helps expand family access, education, resource distribution, and awareness for families navigating rare disease and complex medical needs.

Stay connected

Sign up for updates about Rare Disease & Complex Medical Needs resources, partnerships, family stories, and The Funding Project's National Family Resource Awareness Campaign.

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