You Are Not Alone in This.
Care for Rare was built by a mom who knows exactly what it feels like to get that phone call, go home with a diagnosis you can barely pronounce, and have no idea where to turn. We exists to walk alongside families living with rare disease — practically, emotionally, and as a community. Because the hardest part is not just the diagnosis. It is everything that comes after.
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 medical organizations already doing critical work — but to fill the space they were never meant to fill. The space where real families, like ours, live every single day.
What Makes Us Different?
Our Approach
Most organizations in the rare disease space are focused on the medical and research side. That work is essential. We support it. We celebrate it. And we are not trying to duplicate it.
Care for Rare occupies a completely different lane. We focus on the life that happens while doctors and researchers do their work — school meetings, hospital stays, siblings who feel overlooked, parents who haven't slept through the night in months. We also believe rare disease is a whole-family experience. Every person in that household is affected. Our model is built around the family as a unit, because that is how rare disease actually lives.
What We Are Building
Programs Designed for the Real Life of Rare Disease Families
Every initiative we are building came directly out of a need we felt — or heard from another family who felt it. These are not abstract programs. They are answers to real questions that families ask when they are scared, exhausted, and looking for a handhold.
Welcome Boxes — For families who have just received a diagnosis. Because the moment you hear the words is one of the most disorienting of your life, and you deserve to know immediately that someone sees you.
Sibling & Family Support — Books, care packages, and resources for the brothers and sisters who are often the forgotten members of the rare disease family. They are watching everything. They deserve support too.
Hospital Stay Care — Meal gift cards, cozy blankets, zebra plushies, and comfort items that make a long and frightening hospital stay feel a little more human.
School & Childcare Navigation — Because parents of rare disease children are often walking into IEP meetings and school conversations with no guide. We want to change that.
Family Experiences & Community Events — Bringing rare disease families together so no family ever has to feel as alone as we did. Because there is something irreplaceable about being in a room with people who just get it.
Disease-Specific Connections — Being the bridge between newly diagnosed families and the organizations that already exist for their specific diagnosis. Because they exist, and families often just don't know.
Parent Education & Navigation — Helping families understand the medical system, know their rights, and learn how to advocate effectively for their children.
Advocacy — Raising the public profile of the rare disease community, because visibility matters and most of the world does not yet understand how many families are living this reality.
Corporate & Brand Partnerships — Because businesses have real power to co-create awareness, and the right collaborations amplify our mission in ways donations alone cannot.
Respite & Wellness — For caregivers and parents, because you cannot pour from an empty vessel. The people who carry these families need to be cared for too.
Our Mission
Care for Rare Foundation walks alongside families navigating rare disease — supporting the whole family, not just the patient, through the practical, emotional, and community dimensions of life with a rare diagnosis.