A diagnosis of high-grade neuroendocrine carcinoma (NEC) is especially challenging because of its rarity.

 

Nichole bravely faced one of the rarest forms of this disease: high-grade small cell neuroendocrine carcinoma of the cervix (SCNCC) with less than 250 women are diagnosed with it annually in the US, out of nearly 2 million cancer diagnoses. 
 
Rarity constrains funding opportunities and discourages scientists from pursuing research into high-grade NECs, leaving the work decades behind other cancer research. The lack of clinical evidence limits access to medicines, advancements in treatment, and, in turn, survival rates.
 
As a result, patients and caregivers navigating these diagnoses must become their own advocates, seek out hard-to-find research, consult multiple doctors, and often petition the FDA directly for treatment. This exhausting process costs precious time, a finite resource.

 

This is the fight we continue in Nichole's honor.