News

Wed 24 February, 2016

Rare Disease Day 2016 Ambassador

Sean Hepburn Ferrer

EURORDIS is very pleased to announce that our Rare Disease Day 2016 Ambassador is Sean Hepburn Ferrer; the eldest son of the late actress and dedicated philanthropist, Audrey Hepburn, and the actor, film director and producer, Mel Ferrer. Sean Hepburn Ferrer was the previous Rare Disease Day Ambassador for 2014 and 2015, so we are honoured to have him raise awareness for us on an international platform once again.

Sean contributes to elevating the voice of rare disease into the international consciousness and is a symbol for all patient organisations who are familiar with the struggle of having patient voices heard and the difficulties in the quest to find care. His mother passed away from a rare cancer, Pseudomyxoma adenocarcinoma, a disease that affects only one in a million people, and subsequently recalls the frustration of the long and difficult diagnosis. He quotes her words of solidarity in saying; "alone we can do so little, but together we can do so much" to describe the power of the rare disease community when we speak with a united voice and work to bring patients out of isolation. ‘While 6000-8000 different rare diseases seem like an insurmountable amount, 60,000,000 patients, together with families, medical practitioners and support systems, and which today are coordinated by EURORDIS and NORD, are a power to be reckoned with’.

He is the founder and Chairman (ret) of the Audrey Hepburn Children's' Fund as well as the Honorary Chair of the US Fund for UNICEF Audrey Hepburn Society as well as the patron of Pseudomyxoma Survivor; a global not for profit which supports and advises patients suffering from Pseudomyxoma peritonei. Sean repeatedly dedicates his time and resources into benevolent activities and support for rare diseases such as TVE's (Spain's foremost television network) Rare Disease Day 'Telemarathon' which had a huge national reach. He went on to write a children’s book in commemoration of his friend, artist Mauricio Saravia who was lost to McCune Albright syndrome, and donated 100% of the profits to EURORDIS and NORD. He has also offered his support and backing to Malta, which had their first ever rare disease support group, ‘National Alliance for Rare Diseases Support Malta’, launched by Mrs Michelle Muscat, spouse of the Prime Minister and Chairperson of Marigold Foundation.

As he continues to volunteer his time to EURORDIS and engage in truly philanthropic activities, Sean will speak at the EURORDIS Black Pearl Awards 2016 and continue raising awareness for us as a member of the EURORDIS circle of ambassadors.

We are honoured to have his renewed support as Rare Disease Day Ambassador in 2016 and we invite you, with him, to make the voice of rare diseases heard.

If you’re a patient organisation and interested in using Sean for media interviews, please get in contact with rarediseaseday@eurordis.org or eva.bearryman@eurordis.org

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