Every flower blooms uniquely. That is the beauty.
Our Story
The Rare Tulip began the way every tulip does, with a small bulb, waiting for the right moment to bloom.
When our niece Ellie was diagnosed with RHOBTB2 syndrome, we wanted to help, but we didn’t yet know how. What we quickly learned is that raising a child with a rare disease doesn’t just take a village—it takes an entire community. It requires patience, persistence, advocacy, and a level of strength that often goes unseen.
While our sister focuses on caring for Ellie day to day, we’ve been planting roots in another way, working to lift the weight of advocacy from her shoulders and create space for understanding, connection, and hope.
What we do
The Rare Tulip spreads messages of resilience and possibility through inclusive storytelling and rare disease advocacy. By sharing about kids with rare diseases, we invite others into their world, encouraging empathy, awareness, and kindness.
Whether it’s through purchasing a book, learning about rare diseases, or simply choosing to be a little more compassionate, everyone has the power to make a difference.
Our Mission
Our mission is to cultivate understanding and advocacy for children and families affected by rare diseases through storytelling, education, and community engagement. We exist to tell their story, build a supportive community around it, and make advocacy more accessible so families don’t have to carry it alone.
Our Vision
We envision a world where children with rare diseases are not asked to conform to society, but where society learns to meet them where they are.
Our goal is not to change them to fit our world, but to invite others into the world as they see it, even if only for a moment. Through that understanding, we believe real compassion, inclusion, and change can grow.