For Families
You are seen here.
Rare disease can bring overwhelming, uncertain, and isolating moments—but you don't have to navigate them alone.
Care for Rare is here to offer tangible care, meaningful connection, and a reminder that there is a community standing beside you. Whether your family is newly diagnosed, facing a hospitalization, or simply walking through a difficult season, we want to meet you with care right where you are.
Care, Delivered.
Our Care Boxes are thoughtfully designed to bring comfort, encouragement, and practical support to families navigating rare disease.
Every rare journey looks different, so our boxes aren't one-size-fits-all. Care may be tailored around what your family is walking through—from a new diagnosis or hospitalization to supporting a caregiver, sibling, teen, or family facing an especially difficult season.
Sometimes a box can't change what a family is facing. But it can remind them that they are seen, remembered, and not walking through it alone.
*Submitting a request does not guarantee a Care for Rare Box. Each request is reviewed individually based on eligibility, current resources, and program capacity.
Looking for Support?
Not sure exactly what you need? That's okay.
Tell us a little about your family and what you're currently navigating. Whether you're requesting a Care Box, looking for connection, or trying to find additional resources, we'll do our best to help identify the next step.
When a need extends beyond what Care for Rare provides directly, we'll help connect you with trusted organizations and resources within the rare-disease community whenever possible.
*Care for Rare will review each request individually based on current resources and availability. While we may not be able to meet every need directly, we'll do our best to offer care, connection, or help identify trusted resources that may be able to support your family.
RARE TOGETHER
Sometimes the person you need most is someone who simply gets it.
We're creating opportunities for parents and caregivers navigating rare disease to connect with others who understand the uncertainty, exhaustion, advocacy, celebrations, and everyday realities that can come with rare life.
Our virtual family gatherings will offer a welcoming space for connection across diagnoses—because our conditions may be different, but many parts of the journey are shared.
Looking for Something More?
No single organization can meet every need a rare family may face—and we don't believe families should have to figure out the rare-disease landscape alone.
Care for Rare works to build relationships with disease-specific organizations, nonprofits, healthcare partners, and other trusted resources. When your family needs support outside our scope, we'll help point you toward organizations that may be better equipped to help.
Every Rare Story Matters
Behind every diagnosis is a child, parent, sibling, caregiver, and story worth hearing.
Sharing your family's journey can help another family feel less alone, raise awareness, and give others a glimpse into what life with rare disease really looks like.
Whether your story is newly unfolding or you've been navigating rare disease for years, your experience matters—and we'd be honored to help you share it.