The STAR Foundation Patient Contact Registry is an international registry hosted by Qualtrics in support of Free Sialic Acid Storage Disease (FSASD) patient outreach. This registry collects patient and patient caregiver contact data to be used for the purpose of providing families with targeted information regarding FSASD patient community support, emerging research efforts, and treatment information.

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 STAR Patient Contact Registry

Our Newest Partners

Click here to learn about some of the top researchers of Salla disease, including our newest partners from the Children's Hospital of Orange County (CHOC).

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IN THE NEWS

Riverdale, NY couple raises funds for 3-year-old son with 'extraordinarily rare disease

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"Jerseys for Jackson" raises awareness of Salla disease in Sioux Falls, SD

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Conmovedora Historia De La Pequeña Martina Una Niña Con Una Extraña Enfermedad

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‘Kori’s First Annual Walk and Roll Family Fest’ brings community together

OUR STARS

Visit our STAR pages for information on individual families and their updates.