The fourth annual DART to the Finish charity walk benefiting Dana’s Angels Research Trust (DART) took place Saturday, September 25, 2021, in Greenwich, Connecticut, and virtually around the country. More than 325 individuals and organizations participated and helped raise more than $130,000, which will go towards supporting crucial research into better treatments, clinical trials and …
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Dana’s Angels Research Trust
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.” …
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 …