For Families
Hope. Community. Action.
We’re here to support families living with Alström Syndrome— bringing people together, accelerating scientific progress, and empowering every Alström Family to navigate this journey with strength.
Recently Diagnosed?
Alström Syndrome is rare, and this moment is tough— but you’ve found a community ready to support you with knowledge and compassion.
Quick Links
Navigating life with Alström Syndrome can present unique challenges, and at Alström Syndrome International (ASI), we’re here to ensure you and your family never walk that path alone. Our dedicated team of Family Support Coordinators provides compassionate guidance and practical assistance to individuals affected by Alström Syndrome and their families worldwide.
Family Support & Connections
Want to know how to get in touch with our Family Support Team? Check here!
Sibling Circle
Rare Siblings are resilient too - connect with us here!
Clinics & Stakeholder Meetings
Connecting families, researchers, and partners to collaborate and drive our mission forward.
Family Conferences
Bringing families and experts together to learn, connect, and inspire hope in the Alström community.
Join Our Community
Join our small but mighty community of families, advocates, and researchers united by strength, compassion, and hope.
Ways to Get Involved
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![Group photo of diverse people at an Alström Syndrome International event in a large room with wooden floors.]()
Visit Our Facebook Page
Follow our Facebook page for the latest news, resources, and stories from the Alström Community.
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![Social media profile for Alström Syndrome International shows six colorful campaign images. The first promotes the 2025 family retreat and conference. The second features a smiling person in sunglasses and a red shirt at an event. The third advertises a medical symposium in Texas. The fourth encourages monthly donations with pink heart imagery. The fifth emphasizes parent appreciation day with a close-up of hands. The sixth celebrates National Ice Cream Day with a girl wearing sunglasses and eating ice cream.]()
Follow Us on Instagram
Stay connected with the Alström community—get updates, stories, and the latest news right in your feed.
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![A newsletter cover for Alström Syndrome International, March 2025 issue, featuring a group photo of children and adults with Alström syndrome, smiling and wearing medals, with sections describing the 11th Family Conference and scientific updates.]()
Sign Up for Our Newsletter
Stay connected with the Alström community—get news, stories, and important updates delivered straight to your inbox.
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![A poster promoting the 11th annual Alström Syndrome International Family Medical Conference and Scientific Symposium in Fort Worth, Texas, featuring a bull wearing star-shaped sunglasses with Texas state outline and a longhorn skull as background.]()
Attend Our Next Conference
Join us for the 2026 Family Conference for Alström Syndrome, starting Thursday, May 21st, 2026 at 6:00 PM and ending on Monday, May 25th, 2026 at 10:00AM!
Join Our Patient Registry
Your participation fuels discovery. Join the Alström patient registry — because every rare voice holds the power to drive research forward and ultimately, find a cure.
Knowledge is power. Download our comprehensive Alström Handbook to learn, understand, and navigate life with confidence. This resource is packed with expert information, guidance, expert insight, and tools for navigating life with confidence.
Download the Alström Syndrome Handbook
Meet Our Alström Warriors
These incredible individuals are living boldly with Alström Syndrome—showing strength, courage, and determination every day. Their stories inspire us all to keep pushing forward with hope and purpose.
