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.” …
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February 2021
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 …
Mallinckrodt pulls out of cyclodextrin trial – NPC community will continue to fight for it.
On January 20, 2021, Mallinckrodt Pharmaceuticals called Phil Marella of DART and other NPC community leaders and advised us that they were not going to go forward with an FDA new drug application for Adrabetadex/Cyclodextrin. Of course, this is devastating and frightening news for the Marella family and the more than 80 children in the …