Rare Disease Day 2014 is just 3 weeks away and we understand from EURODIS – the voice of rare disease patients in Europe – that Sean Hepburn Ferrer has been named the Rare Disease Day Ambassador 2014.
For the full article, read http://www.rarediseaseday.org/article/sean-hepburn-ferrer-rare-disease-day-2014-ambassador
Sean Hepburn Ferrer is the eldest son of the late, beloved Audrey Hepburn, actress and dedicated philanthropist, and Mel Ferrer, actor, film director and producer. He has led a successful career in film, which he has balanced with a strong commitment to follow in his mother’s philanthropic footsteps, recently retiring from 20 years spent as Chairman of the Audrey Hepburn’s Children’s Fund, and in joining the Audrey Hepburn Society of the U.S. Fund for UNICEF as its inaugural honorary Chair.
Audrey Hepburn, passed away from a rare cancer, Pseudomyxoma adenocarcinoma, a disease that affects only one in a million and Sean Hepburn Ferrer well understands the overarching loneliness felt in the battle with a rare disease. Sean recalls that he only treatment offered to Audrey Hepburn was a chemotherapy that had been developed 30 years earlier and describes how it was then that the reality hit “the most precious person we knew could not be saved.”
In the words of Audrey Hepburn, “We cannot save everyone… but the knowledge that someone is coming to their rescue… that we care as a society is ultimately as important…”
World Orphan Drugs Congress Asia 2014 will bring together patient groups and industry stakeholders, governments, payers and investors from all across the region to explore the latest to explore opportunities to expedite orphan drug development, from discovery to clinical development, to license, to manufacturing, to launch and to sustainability of supply, so that manufacturers are guaranteed full and speedy reimbursement.
To find out more about how you can be a part of this industry gathering, click here.
What will you be doing for Rare Disease Day 2014? Share it with us here.