The Cure Sanfilippo Foundation is on track, with more than $1 million raised in a GoFundMe campaign, to support…
Articles by Mary Chapman
At its first virtual investor event, biotech company Centogene set a bold mission: to cure 100 rare diseases…
To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes…
Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual…
They aren’t even teenagers yet, but Connor Dobbyn’s closest friends are engaged in a a most serious effort — to…
From “getting messy” in a workshop to participating in an art class, supporters globally are marking MPS Awareness Week, observed…
The MPS Society will use a £195,000 (about $268,000) award from the National Lottery Community Fund to build…
Impassioned videos, including a new one about a 12-year-old who has Sanfilippo syndrome and his parents’ battle to save him,…
Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1,…
For nearly two years, an Ohio couple shared the heartbreaking story of their young son’s diagnosis with Sanfilippo syndrome,…