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What We Do

At The Hope Project for Kids, we know that a rare disease diagnosis brings overwhelming challenges—emotionally, financially, and logistically. Parents are suddenly navigating a complex world of medical care, insurance battles, and the search for critical equipment and support. No family should have to do this alone.  That’s where we come in.  

We connect families with essential medical equipment, informational resources, and a compassionate community that understands their journey. Whether it’s helping a family find funding options, access vital medical supplies, or navigate available support programs, we’re here to lighten the load and ensure no child goes without the care they deserve. 💛. *some of these services are coming soon

Family Support & Financial Assistance  (*Coming Soon)

A rare disease diagnosis can bring unimaginable medical costs, from hospital stays to life-saving treatments that insurance doesn’t fully cover. Families often have to travel across the country—or even the world—for specialized care, leading to lost income, mounting bills, and overwhelming stress.  

 

We offer direct financial assistance to help families cover:  

  • Medical travel expenses – Flights, gas, lodging, and meals for out-of-town medical visits. Example: Helping a family fly to a rare disease specialist across the country when local doctors have no answers.  

  • Medical equipment & accessibility needs – Wheelchairs, mobility aids, adaptive beds, and home modifications that insurance won’t cover. Example: Funding a specialized communication device for a non-verbal child so they can express their needs and emotions.  

  • Emergency grants for household bills – Rent, utilities, and groceries during a family’s toughest moments. Example: Covering a family’s rent when a parent has to leave work temporarily to care for their child post-surgery.  

 

We know that even small financial burdens can quickly become overwhelming for families facing the unknown, and we step in to make sure parents don’t have to choose between paying a bill and getting their child the care they need.

money
hospital bed

Helping Families Access Critical Resources & Medical Equipment  (*Coming Soon)

Navigating the complex web of medical and financial assistance programs can be incredibly overwhelming, especially for families managing a rare disease. Many parents don’t even know what help is out there—so we step in to bridge that gap.  

 

We provide families with:  

  • A comprehensive list of local, state, and federal assistance program that offer financial aid, insurance support, and disability benefits.  

  • Guidance on applying for medical grants and funding sources for wheelchairs, medical beds, adaptive vehicles, and other critical equipment.  

  • Assistance in finding medical supply companies that offer specialized equipment at discounted rates or through nonprofit partnerships.  

  • Help in navigating Medicaid, SSI, and other government programs that can provide long-term financial relief.  

 

We believe that no family should have to fight alone to get their child the care and support they need. Through our resource network, we make sure they know exactly where to turn for help.  

Emotional & Community Support (*Coming Soon)

The rare disease world can feel isolating—many families go years without even meeting another parent who truly understands what they’re going through. That’s why we believe no one should have to navigate this journey alone.  

 

We offer:  

  • Private online support groups where parents can connect, share advice, and offer encouragement in a safe, understanding space,  

  • 1-on-1 peer mentoring where newly diagnosed families are matched with others who have been through similar challenges. Example: A mom who just learned her child has MLD can talk with another mom who’s further along in the journey, gaining insight, resources, and comfort.  

  • Monthly virtual check-ins & community meet-ups to foster connection and friendship between families who get it.  

 

We believe that connection is healing, and when families support each other, it makes the journey just a little easier.  

support group
accessible ride

Joy & Special Experiences (*Coming Soon)

Life with a rare disease often means doctor’s appointments, therapies, and hospital stays instead of playdates and vacations. But childhood should be filled with laughter, adventure, and magical moments—and we’re here to make sure these kids experience the joy they deserve.  

 

Through our Hope Experiences Program, we create unforgettable moments for kids and their families, including:  

  • Dream Days – Personalized VIP experiences for kids, from meeting their favorite celebrity or athlete to getting a behind-the-scenes day at a zoo or aquarium.  

  • Theme Park Adventures – Fully covered trips to destinations like Disneyland or Universal Studios, giving families the chance to forget about medical worries for a while and just have fun together. Sports & Concerts – VIP tickets to concerts, sporting events, and backstage meet-and-greets, making kids feel like the stars they are.  

  • Surprise "Just Because” Gifts – Sending care packages, toys, or even throwing a birthday celebration for a child who has spent their special day in the hospital.  

 

For families who spend so much time in survival mode, these joyful moments remind them that life is still beautiful, even in the hardest times.

Advocacy & Awareness (*Coming Soon)

With over 7,000 rare diseases, many of which have no cure or effective treatment, raising awareness is critical. Rare diseases are often misunderstood, underfunded, and overlooked—which is why we work to amplify the voices of rare disease families and push for better research, support, and policies.  

 

We do this by:  

  • Sharing powerful family stories to educate the public and increase understanding of the rare disease community.  

  • Hosting awareness campaigns during Rare Disease Day, MLD Awareness Month, and other key dates.  

  • Partnering with research organizations to ensure patient voices are included in medical advancements.  

  • Speaking at conferences & events to advocate for improved resources, healthcare access, and early diagnosis.  

 

Every story we share and every awareness initiative we run helps bring these diseases out of the shadows and into the conversation. 

rare disease sign

How You Can Help

Want to bring hope to families who need it most? There are so many ways to get involved:  

 

Donate – Your contributions help fund life-changing medical travel, rent assistance, special experiences, and more.  

Volunteer – Whether you want to help at events, assemble care packages, or provide mentorship, we’d love to have you on board!  

Sponsor an event – Partner with us to fund special experiences for kids and families.  

Spread the word – Follow us on social media and help raise awareness for rare diseases.  

 

Together, we can make sure that no family facing a rare disease ever feels alone.  

At The Hope Project for Kids, we believe that every child deserves to be seen, supported, and celebrated, no matter their diagnosis. We are here to walk this journey with families, offering hope, relief, and moments of pure joy along the way.  

 

Want to learn more? Let’s connect! 💛

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