For brothers and sisters
There's a whole part of this nobody asks about.
Uniqlee is for both people with rare disabilities and their families, especially the siblings. The siblings who felt like no one could relate and learned to push their feelings down. We build connection, educate, and remind people that they are not alone.
What we do
Two things, done properly, instead of ten things done thinly.
Nobody explains it twice
An online writing section from someone who has lived as the sibling of someone with disabilities.
One condition at a time
Every month we spotlight a different rare disability and explain it properly, in plain language. What it actually is, what daily life looks like, and what it tends to mean for siblings.
Why siblings
The part that's hard to say out loud.
Nobody prepares you for missing someone who's sitting right next to you.
Two things at once
You can love your sibling completely and still want a relationship you never got to have. Both are true, permanently, and neither one makes you a bad sibling.
The hard days are yours too
When they're overwhelmed, you're in the room for it. You can't fix it, sometimes you're what they're upset at, and afterward you put it away because everyone is already carrying a lot.
Lived experience
Written by siblings, for siblings.
This month
A new condition in the spotlight every month.
Learn one rare condition properly
Every month we spotlight a different rare disability — what it actually is, what daily life looks like, what siblings tend to carry, and where to go for real support. First up, coming soon: Lamb-Shaffer syndrome.
Mission
What we're for, in one sentence.
Our mission
Rare is not the same as alone.
Our mission is to support individuals and families affected by rare disabilities, with a special focus on empowering siblings through connection, resources, and advocacy, while raising funds to strengthen inclusive and resilient disability communities.
Our commitments
Three promises we hold ourselves to.
Connection first
The single thing siblings tell us they needed most is another sibling. We build connection online, where nobody has to explain from the beginning.
Education in plain language
Rare conditions are hard to learn about. What exists is written for clinicians or buried in research papers. We take one at a time and explain it so anyone can understand it.
Money that goes outward
We can't accept donations yet. Once our nonprofit registration is complete, we want to raise money and send it back into disability communities, through direct grants to the rare disease organizations doing frontline work.
What we believe
Loving someone completely and being tired are both true at once, permanently, and neither one cancels the other.
Nothing about them without them
Right now this is one sibling writing. Whoever writes here, their brother or sister stays a person with their own life, never a device for making a point about someone else's.
Honest, not tidy
We don't do inspiration. Resentment, grief, and fierce love live in the same house, and pretending otherwise is why siblings stay quiet.
Small and specific
We'd rather do three things properly for a few hundred families than ten things thinly for nobody in particular.
Free at the point of need
No family pays to read what we write or use what we make. Ever.
Who we're for
People with rare disabilities
This is their story first. Everything here is written with the understanding that they are people with their own lives, not conditions to be explained.
Children, teenagers, adults
Whether you're twelve and have never met anyone who gets it, or forty and still carrying questions nobody asks you about. It doesn't expire.
Parents, schools, clinics
Parents who see it and don't know what to do, and the professionals who could make room for siblings if someone asked them to.
Where we are
Honest about the stage we're at.
We're at the beginning, and we'd rather say so.
Uniqlee is newly formed. Our nonprofit registration is in progress, which means we aren't accepting donations yet. When that's complete, we'll open giving and publish exactly where every dollar goes.
In the meantime the work that matters most is already possible: writing honestly, explaining these conditions properly, and finding the siblings who've been managing alone. If that's you, the stories are the door.
About us
Why this exists, and who started it.
Started by a sibling.
Uniqlee grew out of a deeply personal experience: its founder grew up alongside a sibling with a rare disability and witnessed the grief, challenges, and emotions that can come with that experience.
Today, Uniqlee is working toward becoming a nonprofit organization that brings together people with disabilities, their families, and siblings in particular. We are building a space where those connected to rare disabilities can find understanding, share their experiences, and feel less alone.
How it started
My sister loves pasta, books, and going outside. She’s funny, loving, and sweet in a way that is entirely her own. If you know her personally, you know that simply being around her teaches you how to be a kinder person.
Growing up with a sibling with Lamb-Shaffer syndrome meant that stress, uncertainty, and difficult moments became part of our family’s everyday life. They became part of our normal, something familiar that, at times, didn’t feel like it should have to be.
Over time, I learned how to read my sister before she became overwhelmed. I learned what made her happy, how to calm her down, and how to care for her in ways most siblings never imagine they would ever need to. At times, it was rough. I would wonder, “Why can’t I just have a normal sibling relationship?”
But there was also so much humor. So much closeness. Our family developed its own language around things most families never have to talk about. We learned how to laugh during moments that probably weren’t supposed to be funny and how to celebrate milestones that others might not have noticed. Even through the difficult parts, our experiences taught us how to show up for one another.
Uniqlee exists to build a community that isn’t talked about enough: a community for siblings whose lives have been shaped by experiences like these. A place to connect, to be understood, and to realize that whatever your version of this story looks like, you’re not the only one living it.
Why “Uniqlee”
The name comes from two places. The first is the word unique, because every person with a rare disability, and every family living alongside one, has a story that looks like no one else’s.
The second is my sister, whose nickname is Lee-Lee. So the name carries a piece of her in it, which feels right, since none of this would exist without her.
We read every message. It might take a week, but we read every one.
Uniqlee is newly formed and our nonprofit registration is in progress. We aren't accepting donations yet.
Education
One condition at a time. Updated monthly.
Rare doesn't mean unknowable.
A rare condition can feel impossible to learn about. What information exists is often written for doctors or buried in research papers. Each month we take one and explain it properly: the medicine in plain language, the daily reality, and what it tends to mean for siblings.
Current spotlight
Lamb-Shaffer syndrome
Our first spotlight is being researched and written now. Check back soon.
Sources
Sources will be listed here when this spotlight is published.
Archive
Past spotlights stay up permanently.
Coming soon
The next condition we spotlight will be announced here.
Tell us what to cover
If your family's condition hasn't been spotlighted yet, send it to us and we'll research it properly.
Lived experience
Honest writing about being the other kid.
The part nobody writes down.
Stories from siblings — mine and other people's. No lessons at the end, no tidy bows. Just the actual experience, written down so the next person recognizes themselves in it.
All stories
Lived experience