What is Happening In Sanfilippo Research?
Stay up to date on the latest information regarding scientific aspects of Sanfilippo Syndrome and progress to find a treatment or cure.
Recent News
History being made: ScreenPlus, the largest U.S. newborn screening study, includes Sanfilippo
History is being made! Starting this week, newborns in the largest ever U.S. newborn screening study, ScreenPlus, are being screened for Sanfilippo syndrome Type B! Addition of Sanfilippo Type A will follow in the coming months! Why invest in Newborn Screening...
Cure Sanfilippo supports North Carolina legislation HB 736 to expand state newborn screening
Cure Sanfilippo Foundation has joined other rare disease patient organizations in thanking the North Carolina House of Representatives for its leadership in passing HB 736, Timely Updates to Newborn Screening Program, and calling for the Senate to also pass the...
Cure Sanfilippo joins in calling Congress to support The BENEFIT Act
Cure Sanfilippo Foundation has signed-on to a stakeholder letter that calls for the U.S. Congress to support the Better Empowerment Now to Enhance Framework and Improve Treatments (BENEFIT) Act (S. 373), sponsored by U.S. Senators Roger Wicker (R-MS) and Amy Klobuchar...
April 2021 Research Update: New research in 2021 and promising projects already underway
Children should have the chance to grow up. Parents should never have to watch their children suffer and die. There needs to be a treatment or cure for Sanfilippo Syndrome. That’s why you support the Foundation's mission to help children with Sanfilippo. Critical...
Newborn screening pilot ScreenPlus that includes Sanfilippo Type A and B
When children with a rare disease are diagnosed at birth, they have the greatest opportunity to receive timely, approved treatments or participate in clinical trials that can provide them better quality of life and less pain and suffering. Early diagnosis and...
Strengthening the rationale for the use of the “molecular tweezer” CLR01 in the treatment of Sanfilippo
Cure Sanfilippo Foundation has co-funded a research grant with Sanfilippo Children's Foundation (Australia) and H.A.N.D.S consortium, an international network of Type C families and groups. This grant is to Associate Professor Alessandro Fraldi at CEINGE - Advanced...
Other Sources of News
ClinicalTrials.gov
Immediately see when clinical trials for Sanfilippo Syndrome are listed and detailed information.
Sanfilippo News
A site that aggregates news about Sanfilippo Syndrome into a single location.
RARE Cast – Global Genes’ Podcast
Hosted by award-winning journalist Daniel Levine, RARE Cast focuses on the intersection of rare disease with business, science, and policy in a weekly podcast.