News

October 8, 2020October 8, 2020

Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos

News, syndicated

Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare ... Read more

October 1, 2020October 1, 2020

Early Diagnosis of Sanfilippo Syndrome Type C Difficult But Key, Report Shows

News

An accurate and early diagnosis of Sanfilippo syndrome type C can be difficult, as this subtype is quite rare, but important to prevent life-threatening complications and improve life quality, a ... Read more

September 25, 2020September 25, 2020

Cure Sanfilippo Foundation Aims to Educate on Remote Learning for Special Needs Children

News

A new initiative led by the Cure Sanfilippo Foundation is seeking to provide more insight on the impact of remote learning on children with Sanfilippo syndrome and other developmental disorders. ... Read more

September 17, 2020September 17, 2020

AllStripes Asking Patients, Families to Share Health Records to Aid Research

News

Sanfilippo syndrome patients and caregivers are being asked to help speed the development of potential disease treatments by joining AllStripes, and contributing their de-identified medical records to research efforts. The ... Read more

September 10, 2020September 10, 2020

How Sanfilippo and Like Disorders Affect 5 Senses Lacks Research, Experts Say

News

Problems with one or more senses are common in people with Sanfilippo syndrome and other mucopolysaccharidoses (MPSs), but there is very little research into how these impairments affect daily ... Read more

September 3, 2020September 3, 2020

Same But Different Photo Contest Celebrates People With Rare Diseases

News, syndicated

Same But Different, a U.K. nonprofit that uses the arts to bring communities together, is holding a calendar photography competition to raise awareness for rare diseases. Under the theme ... Read more

September 3, 2020September 3, 2020

GlycoNet Grants $3.9M to Canadian Researchers to Study Sanfilippo, Other Diseases

News

The Canadian Glycomics Network (GlycoNet) has granted $3.9 million in funding for research projects aimed at mitigating the healthcare burden in Canada and contributing to a better understanding of ... Read more

August 27, 2020August 27, 2020

Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input

News, syndicated

Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search for new medicines for rare disorders and incorporating more patient ... Read more

August 27, 2020August 27, 2020

SLS-005 Given Orphan Drug Designation for Sanfilippo in EU

News

The European Medicines Agency has granted orphan drug designation to SLS-005 (trehalose) for the treatment of Sanfilippo syndrome. This designation, which follows a positive opinion from the agency’s Committee ... Read more

August 20, 2020August 20, 2020

EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

News, syndicated

The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. ... Read more

Pin It on Pinterest