Free Sialic Acid Storage Disorder: Progress and Promise

"We initiated a multidisciplinary collaborative effort involving worldwide academic clinical and scientific FSASD experts, the National Institutes of Health (USA), and the FSASD patient advocacy group (Salla Treatment and Research [S.T.A.R.] Foundation) to overcome the scientific, clinical and financial challenges facing the development of new treatments for FSASD. We aim to collect data that incentivize industry to further develop, obtain approval for, and commercialize FSASD treatments. This review summarizes current aspects of FSASD diagnosis, prevalence, etiology, and disease models, as well as challenges on the path to therapeutic approaches for FSASD."     

 

Read the entire publication by researchers at the National Institutes of Health

WATCH: 3-Minute Talk by Marya Sabir, National Human Genome Research Institute

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.

Screen%2520Shot%25202020-07-05%2520at%25

 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).

choc.jpg

IN THE NEWS

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

download (1).jpeg

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

2TG2HhM1_400x400.jpg

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

unnamed (1).jpg

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

CBS7_KOSA_Station-Logo-311x98+white.png

OUR STARS

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