Pseudomyxoma adenocarcinoma is the rare form of cancer that took the life of one of the most beloved actors and humanitarians of all time — the great Audrey Hepburn. As part of her incredible legacy, her son is working hard to raise awareness for the many others out there battling rare diseases.
Sean Hepburn Ferrer serves as a rare diseases ambassador, working tirelessly to raise awareness of and money for the diseases that leave people with few treatment options.
Sean says a rare disease is defined as something affecting less than 200,000 Americans. Yet when you add up the number of rare diseases afflicting people, you’re left with staggering numbers: 30 million people living with a rare condition. For these millions of Americans, there is not much help. Sean points out that there are less than 400 FDA approved treatments to help all of these people.
He describes the loneliness his family felt after his mother’s diagnosis and describes how organizations like The National Organization for Rare Disorders (NORD) are helping families navigate through rare diseases and not feel so isolated.
Sean says he’s propelled to make a difference in this fight by his mother’s passionate belief that every life is precious.
Click here to visit rarediseaseday.org to get more information about this life-saving work.