You Are Not Alone in This.
Care for Rare was built by a mom who knows what it feels like to receive a diagnosis you can barely pronounce and suddenly find yourself in a world you never expected.
We exist to help families navigating rare disease feel seen, supported, and connected through tangible care, meaningful community, and advocacy—because sometimes the greatest need isn't another medical answer. It's knowing someone sees the family living behind the diagnosis.
How We Got Here
One Diagnosis Changed Everything
When Asher was nine days old, we got a phone call that would reshape our entire lives. His newborn screening had flagged something. We needed to head straight to the NICU. The diagnosis: Classic Galactosemia — an ultra-rare genetic metabolic condition that affects how the body processes certain sugars found in milk.
We had never heard of it. We could not even pronounce it. While doctors and nurses stuck him and begin preparing his tiny body for surgery in hopes to save his live though his liver was failing, I held him in my arms and tried to process even a piece of information being thrown at me. And then, in the most surreal way, we were told “if he survives, it’s going to be a long journey”. A nine-day-old baby, a diagnosis neither of us could fully explain yet, and a quiet so heavy it was almost loud.
I remember sitting on the couch that first night searching the internet for hours — trying to piece together what Classic Galactosemia actually meant, what Asher's life might look like, whether anyone else had been through this. What I found was scattered, clinical, and cold. There were families who had been through this and experienced what we had, but they weren’t what came up on Google. Instead, the very first thing I read was: “Most infants diagnosed with Classic Galactosemia after day 10 do not survive.”
That isolation was its own kind of grief. It wasn't just that we didn't have answers — it was that we didn't know where to find them.
In the months that followed, I committed myself to learning everything I could and connecting with anyone I could find. I spent hours searching for the kind of support I needed. I found organizations doing remarkable work on the research and medical side. But there was a gap — a wide, aching gap — on the life side. On the family side. On the side that asks: how do we actually live through this?
That gap is why Care for Rare exists. Not to replace the organizations already doing critical work, but to fill a different space alongside them—the space where families need to feel seen, cared for, connected, and reminded that they are not navigating rare disease alone.
What Makes Us Different?
Our Approach
Rare families are supported by an incredible network of disease-specific organizations, nonprofits, healthcare teams, advocates, and community resources. We believe families are best served when those organizations work together—not when good work is unnecessarily duplicated.
Care for Rare focuses on the space we are uniquely positioned to fill: providing tangible care through thoughtfully designed Care Boxes, creating opportunities for meaningful connection, and helping make rare families more visible through awareness and advocacy.
When a family needs support beyond what we provide directly, our goal is not to become everything to everyone. It's to help connect them with trusted organizations and resources that may already be doing that work well.
There is room for all of us in rare.
How We Care
CARE BOXES
Our signature Care Box program provides tangible comfort and encouragement to families navigating rare disease. Boxes can be thoughtfully tailored for different moments in the rare journey—from a new diagnosis or hospitalization to recognizing caregivers, siblings, and other members of the family.
CONNECTION
Rare disease can be isolating, even when you're surrounded by people who care. We create opportunities for rare families to connect with others who understand and help families discover trusted organizations and resources when their needs extend beyond what Care for Rare provides directly.
ADVOCACY
Rare families deserve to be seen and understood. Through storytelling, education, community partnerships, and initiatives like Go Rare to Show You Care, we work to increase awareness and turn that awareness into meaningful action for rare families.
Better Together
We believe collaboration makes the rare-disease community stronger. Care for Rare is proud to work alongside organizations, healthcare partners, businesses, and community resources so families can benefit from each organization's strengths.
Our Mission
Care for Rare Foundation exists to ensure families navigating rare disease feel seen, supported, and connected through tangible care, meaningful community, and advocacy.