01 / TOGETHER
Community
Creating a welcoming space where individuals, families, and caregivers feel seen, heard, and connected.
A rare condition. A collective voice.
Connecting families.
Inspiring change.
Building understanding, community, and a stronger future for people affected by Congenital Sucrase-Isomaltase Deficiency (CSID).
Discover our mission
Why we're here
Awareness is where
change begins.
The CSID Collective is an independent awareness and advocacy initiative dedicated to connecting families, increasing understanding, and inspiring meaningful change for those affected by Congenital Sucrase-Isomaltase Deficiency.
02 / UNDERSTANDING
Education
Making CSID easier to understand and helping families, educators, and healthcare professionals access clear information.
03 / MEANINGFUL CHANGE
Advocacy
Amplifying voices and supporting progress toward better recognition, care, and access to treatment.
Every family deserves to feel heard. Every diagnosis deserves to be understood.
Our vision
More than awareness.
CSID affects everyday moments that others may take for granted. We believe understanding those experiences is the first step toward making life better for the people living them.
Our goal is to bring people together, share trustworthy education, and help build a future where individuals with CSID receive the recognition and support they deserve.
Growing our resource library
Understanding starts here.
We're developing approachable educational resources for both families and the people who support them.
For individuals & families
Understanding CSID
A straightforward introduction to CSID, including digestion, symptoms, diagnosis, management, and everyday life.
Download Understanding CSID (PDF)Educational resource · Not yet medically reviewed
For schools & educators
CSID at School
Practical awareness for school nurses, teachers, and administrators supporting students with individualized dietary and care needs.
Download School Guide (PDF)Educational resource · Not yet medically reviewed
Join the conversation
Small steps. Collective impact.
Whether you're living with CSID, supporting someone who is, or here to learn, there's a place for you in this conversation.
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