We Empower Families
To Create Cures for
Rare Disease.
Resources for rare families to connect, collaborate and
create change needed for their children.
We Care About Rare.
We know the challenges of rare disease life, because we live it every day. A child's rare disease diagnosis can be both overwhelming and heartbreaking - but there is hope, and you are not alone. As rare disease parents we are here to help you as you navigate your rare disease journey toward a cure. We know it is challenging, and that time is of the
essence. Our goal at Rare Village is to give you resources to help navigate the process. We hope that you will join our little village as we help to connect, collaborate and create the change needed to deliver hope and a future to children of rare childhood disease.
Statistics about Rare Disorders
While each rare disease may affect only a small number of individuals, together they impact millions of families around the world. Rare disease patients often face delayed diagnoses, limited treatment options, and a shortage of research—all while navigating the emotional and financial toll of complex care. At Rare Village, we believe that behind every number is a child, a family, and a story worth fighting for.
1
in 10 people lives with a rare disease—over 30 million people in the U.S. alone.
95
of rare diseases have no FDA-approved treatment.
50
of rare disease patients are children, many of whom are terminal or medically complex.
How We Help & Our Impact
We founded the Rare Village Foundation because as parents we know first
hand the struggles of rare disease life, as well as the power of hope,
‘community, and hard work. We want every rare parent or family confronted
with a terminal diagnosis to know that they are not alone.
35
rare disease families supported through fiscal sponsorship, fundraising guidance, and advocacy tools.
10
million dollars raised to accelerate family-led research and drug development efforts.
27
hospitals, labs, research, and academic institutions funded
The Process
Ready to start a fund with Rare Village? Here are the next steps.
Step 1: Contact Rare Village to start a fund
Email us at info@rarevillage.org to get started. We will create an agreement for you to sign, collect your banking information to transfer funds, and photos to share with our community.
Step 2: Sign your agreement
We are happy to answer any questions you may have. Just send us an email at info@rarevillage.org.
Step 3: Sign into GoFundMePro(Formerly Classy)
You will receive an email from GoFundMe Pro, our fundraising platform. Follow the instructions to log in and watch the tutorials for your campaign design!
Step 4: Apply for grants
Step 5: Utilize company match programs
Many companies have a donation match program. Ask your HR department, family, and friends to consider this free money toward your goal.
Partners/Visionaries
Rare Village Foundation is honored to be supported by a founding visionary — and we are urgently seeking more bold philanthropists and partners who believe that families are the engine behind rare disease breakthroughs.
These visionaries recognize that the science is ready — what’s needed now is investment to get promising, family-led research across the finish line and into clinical trials. Their support would fuel webinars, expert-led events, playbooks and toolkits that empower families to tell their stories and fund the advancement of treatments their children urgently need.
Together, we’re building a faster, more direct path from family-driven fundraising to clinical research. And we couldn’t do it without the rare visionaries who believe in the power of family.
Frequently Asked Questions
What is Rare Village Foundation and how can this nonprofit help my family?
Rare Village Foundation is a fiscal sponsor dedicated to empowering families affected by rare diseases. We provide support through fundraising, advocacy, and resources designed to simplify the process of accessing care, research, and treatments. By connecting families to the broader rare disease community, Rare Village helps provide tools and knowledge to navigate challenges, including finding specialists, participating in clinical trials, and raising funds for research.
Where does the money go?
The money raised in each fund stays with that fund until YOU decide what project(s) to sponsor.
How can I connect with other parents or caregivers of children with similar rare diseases through Rare Village?
Rare Village provides a community platform that allows parents and caregivers to connect, share experiences, and provide mutual support. You can join our private Facebook group where families facing similar challenges can exchange advice, stories, and coping strategies.
How does Rare Village engage philanthropists and "visionaries" to support rare disease research?
Rare Village works with philanthropists and visionary donors who are passionate about supporting the rare disease community. We connect these donors with specific research initiatives or family-led fundraising campaigns that align with their interests. Through these collaborations, we aim to accelerate treatments and therapies by harnessing the resources of individuals and organizations that are committed to making a meaningful impact.
Can I still become my own nonprofit if I start a fund through Rare Village?
Absolutely! Many of our funds have graduated to become their own nonprofits, using Rare Village until their status is approved.
What is a fiscal sponsor?
A fiscal sponsor is an existing nonprofit that extends the benefits of its charitable status to your fund. Rare Village offers personalized fundraising support to help families raise money for research or treatment options. This includes creating custom campaigns, providing guidance on donor engagement, and connecting you to a network of potential donors, including philanthropists and visionaries who support rare disease initiatives. Our platform makes it easier to fundraise and advance research for specific diseases.
Does Rare Village issue tax receipts?
Yes! Once a member of Rare Village we take care of all IRS fillings and tax receipts.
What resources does Rare Village provide for education and advocacy?
Rare Village shares monthly newsletters and regularly updates our social media with research news, advocacy alerts, and grant opportunities. We highlight rare patients who have submitted wishes to our 25 Million Wishes campaign every One Wish Wednesday, and spotlight one of our family-led funds each Featured Fund Friday — using our platform to elevate families, raise awareness, and shine a light on the urgent need for research support in the rare disease community.
What makes Rare Village different from other rare disease organizations?
Rare Village is unique because it prioritizes the voices and experiences of families affected by rare diseases. We not only provide the tools and support needed for research and treatment but also focus on community-building and connecting families to each other, creating a “village” of support. Our emphasis on empowering families to advocate for their children, combined with our focus on simplicity and speed, ensures that families receive the best possible resources and guidance in a timely manner.
