Librarey is the work of Sierra, Albert, yours truly, and all the amazing people who have supported us along the way.
It all began with Sierra’s famous 300 page pdf (which can still be found here). Like many other raregivers, she's had a lot of practice telling her story:
In 2021, my son was diagnosed with Warsaw Breakage Syndrome and at the time there were less than 25 documented cases worldwide. During the short time we have been on this journey I have found that the best resources and tips have come from caregivers walking a similar journey within the rare and disability communities. The doctors, therapists, case workers, service facilitators often didn’t even know about resources I would tell them that I had found from another parent! I am a passionate believer in knowledge is power and sharing knowledge empowers us all. I have been curating this resource guide to share with families, friends, & professionals near and far to spread awareness about all of the amazing organizations and services that are out there.
Albert and I met Sierra while exploring what to build first for our startup, Comend. When we saw Sierra’s conviction about helping rare families find what they need more easily we jumped at the opportunity to help. A few months of development and many user tests later, we've launched and are excited about what we're going to build next. Our hope is that Librarey is just the beginning of a platform that brings rare families and researchers together towards the common goal of new treatments.
We’re so excited for you to try out Librarey we and hope you find it helpful.
We've spent many late nights gathering resources, studying existing tools, and developing this very site from scratch.
But don't let that pull your punches! We’re big believers in co-creation and are looking forward to hearing how we can make this better for you 😊.
If you have any questions or comments feel free to contact us or email firstname.lastname@example.org and we'll be happy to respond.
Sierra, Flawnson, and Albert
About the team
We're a small team of passionate people who are figuring out how to help rare disease families.
Head of Product Marketing
I'm a mom of two amazing boys, one of whom has been diagnosed with Aicardi Goutieres Syndrome, and a wife to my wonderful husband. My goal is to create a welcoming space in the rare disease community where everyone feels connected and better equipped. When I'm not busy, you'll often find me snuggled up with my family while listening to T.S. 🏻