ASI Clinics &

Stakeholder Meetings

Attend our Clinic/Stakeholder Meetings

Our Alström Syndrome Clinics provide a unique and invaluable opportunity for families affected by Alström syndrome. These clinics bring together leading doctors and medical professionals who understand the complexities of the condition, offering personalized care and support.

In addition to individualized appointments, each clinic includes a stakeholder meeting, where medical professionals, families, patients, and clinic staff all come together in the same room to openly discuss Alström syndrome. These shared conversations help everyone better understand the challenges, needs, and experiences of the entire community.

Families not only receive expert medical guidance but also have the chance to connect with others on a similar journey—sharing experiences, building lifelong relationships, and learning from one another. It’s a powerful, community-focused experience that fosters understanding, support, and hope. Whether it’s your first time or a return visit, attending a clinic can be life-changing—for both individuals living with Alström syndrome and their loved ones.

Upcoming Clinic Weekends

  • Pediatric Clinic - Rochester, NY

    April 23-26, 2026

    Rochester, NY

    Golisano Children’s Hospital

    Request More Info

  • Adult Clinic - Indianapolis, IN

    September 24-27, 2026

    Indianapolis, IN

    Riley Hospital at Indiana University

    Request More Info
Two people sitting at a table, smiling, holding water bottles, in a room with beige walls and a large TV on the wall.
Two boys are playing a game with colorful pieces on a wooden table in a waiting room.
A diverse group of six people, five women and one man, posing outdoors with a black guide dog in front of green bushes. They appear to be at a park or garden during daytime.
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Two children, one girl and one boy, with glasses, on a carpeted floor, with a black walker in front of them.
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Previous Testimonial about Clinic Attendance

3 individuals sitting on a couch at the Pediatric Clinic smiling

"I would like to say that it is a great honor for us to be here with all of you. We can meet you up close, you have so much experience and so much to teach us. These are the most productive and important days for us. We have had so many questions answered by the doctors, questions that we had for a long time and no one in Brazil could answer. It was very, very difficult for us at first when we were diagnosed. We felt lost and hopeless. However, time has passed. We are learning to deal with the difficulties of children. It is great to have this support network, to meet other families, to be part of this incredible group. This support is very important to us. We are very grateful for you giving us this opportunity. What we have learned most is that, although there is no cure or treatment, the main thing is to try to provide a better quality of life for children and to stay strong and know that we are not alone in all this.”

—Lucas Dezorzi, Father of two children with Alström Syndrome