Facebook Violates Trust of Private Patient Groups

Facebook Violates Trust of Private Patient Groups

Thousands of women who carry mutations in the genes BRCA1 and BRCA2 and joined ‘private’ Facebook groups recently learned that their groups were vulnerable to a Chrome plug-in that allowed marketers to discover group members’ names and other private...
Angelina’s Impact: Advocates Share

Angelina’s Impact: Advocates Share

It’s been five years since Angelina Jolie announced to the world she carries a BRCA1 mutation and had a prophylactic double mastectomy to lower her risks of developing breast cancer. Below advocates reflect on the impact she has made by sharing her story and...
Rare Disease Day 2018

Rare Disease Day 2018

Rare Disease Day is an opportunity to raise awareness for 7,000+ rare diseases and the 30 million Americans who are affected by a rare disease(s). The theme for this year’s Rare Disease Day is “Research” and the important role that patients play...