We Empower Families to Create Cures for Rare Disease.
Resources for rare families to connect, collaborate and create the 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.
How we Help
Empower
For families who choose to pursue treatment development independently, it is scary and seems insurmountable - but it can be done. We work with families to give them control of their process and funds, so that they can focus on their timelines and their children.
Connect
Not all families want to pursue treatment development, but all families do need to live their best rare disease lives. We help connect families to rare disease networks as well as their local communities to create a support network for both them and the children.
Collaborate
For most of us, the world of applied research is overwhelming and takes months or years to navigate. By connecting families with existing rare resources and projects, we can expedite the path to treatment and quality of life outcomes for rare families.
Join the Zebra
Race for Rare!
Show your stripes and join the Rare Village Foundation’s virtual Zebra Race for Rare that directly benefits kids with rare diseases. Register for the run and start a fundraising team today to help our kids!
Resources for your Rare Journey.
For most of us, the world of applied research is overwhelming and takes months or years to navigate. By connecting families with our existing rare resources and projects, we can expedite the path to treatment and quality of life outcomes for rare families.
Rare Village Podcast
Listen to candid conversations about rare disease life and resources on iTunes.
Fiscal Sponsorship
Inquire about opening a RARE disease donor advised funds.
Coming Soon!
Join our Caring Community.
You don’t have to have a rare child to be a rare advocate. Community matters more than ever to a rare family. We build programs and platforms that can help you support loved ones on their path to living their best rare disease lives. Join our community today!