Adrabetadex (Cyclodextrin) Clinical Trial. As many of you may know, much to the surprise of the NPC community, Mallinckrodt in January 2021 abandoned the Adrabetadex clinical trials; which Andrew Marella has been a part of for over 7 years. Much of the NPC community’s efforts since that announcement had been focused on what would come …
Town of Greenwich Proclaims February 26, 2021 as ‘Rare Disease Awareness Day’
DART participated in the town of Greenwich’s second annual, and this year, “virtual” rare disease awareness day. “It was truly and honor for the second year to join other families in Greenwich who are fighting to make a real difference in the lives of those suffering from some of the more than 7,000 rare diseases.” …
DART To The Finish Charity Walk for NPC 2021 – Saturday * Sept. 25, 2021 * 8:30a
Gather your friends and family and join us for an invigorating 2.0 mile walk around beautiful Tod’s Point in Old Greenwich, help us raise much needed funds to find a cure for Niemann-Pick type C disease. No beach pass, no problem, DART has you covered. All Greenwich and CT COVID-19 guidelines will be followed for …