Rare Disease Day 2015 Ambassador

EURORDIS is delighted to announce the Rare Disease Day 2015 Ambassador: Sean Hepburn Ferrer

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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.

Sean Hepburn Ferrer is very well placed to be the Rare Disease Day 2015 Ambassador. He is familiar with the struggles people living with a rare disease and their families face. His mother, Audrey Hepburn, passed away from a rare cancer, Pseudomyxoma adenocarcinoma, a disease that affects only one in a million.

The personal experience of the Rare Disease Day 2015 Ambassador is common to the millions of people with rare diseases, as well as their families and caregivers. With the theme of Rare Disease Day 2015 focusing on Living with a Rare Disease, we are honoured to have the support of Sean Hepburn Ferrer as Rare Disease Day 2015 Ambassador.

It is in this spirit that we invite you, alongside Sean Hepburn Ferrer, to pay tribute to the millions and millions of parents, siblings, grandparents, spouses, aunts, uncles, cousins, and friends whose daily lives are impacted and who are living day-by-day, hand-in-hand with rare disease patients.

A quote from Sean Hepburn Ferrer

On January 20, 1993, my mother, Audrey Hepburn, passed away from a rare type of cancer – Pseudomyxoma adenocarcinoma. When we found out that the only tentative treatment was a chemotherapy (5 fu leucovorin) available since the 60s, we, her family, truly connected with the fact that this disease was not a priority for Big Pharma. The most precious preson we knew could not be saved.

So, when Dawn Green, CEO and founder of the 'Pseudomyxoma Survivor' Charity and herself a one in a million cancer survivor, nominated me to be the ambassador for Rare Disease Day, I knew that, not only did she have this rare cancer but also a rare ability to transform darkness into light and smile in the face of adversity.

'Rare' is a word most often used to convey the same values as  'precious'… unique… valuable. And if one adds up all of us precious beings that suffer from a 'rare' disease, the number is staggering – 60,000,000 and counting. The way each of us deals with what ails us is always unique and therefore, I feel it is quite easy for any of us to relate to 'rarity'… that rarity that comes in those moments when we must truly face life and adversity by ourselves.

When my mother visited Africa for UNICEF she would often say; "we cannot save everyone… but the knowledge that someone is coming to their rescue… that we care as a society is ultimately as important…" It is in this spirit that I accepted this invitation.

The gift of Audrey Hepburn to the silver screen… to style and, ultimately, to humanitarian work was 'one in a million'… and so was the disease that took her from us.

I am honored to stand, in her graceful place, and shine a light on a delicate group of individuals who, nevertheless, in sheer numbers are a force to be reckoned with.

Thank you,

Sean Hepburn Ferrer

Sean Hepburn Ferrer – Rare Disease Day Ambassador – 2014 report

Thank you for this precious opportunity. As we approach 28 February which marks Rare Disease Day 2015, I look back on what 2014 has taught me and enabled me to achieve on behalf of EURORDIS and its membership.

After attending the beautifully produced EURORDIS Black Pearl Gala and related events in Brussels on 25 February 2014, as well as the equally impressive NORD Gala in Washington DC on 8 May 2014, the first thing that became clear to me is that whether those involved are guests, patients, their relatives, members of the scientific and medical community or industry representatives, they are all united in this extraordinary crusade by one single purpose: solidarity. Therein lies the secret of what is and will remain the impetus of this powerful movement against these rare afflictions: My mother used to often quote Helen Keller: "Alone we can do so little, but together we can do so much". 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.

In March I was fortunate to participate in both the Ismael Cala / CNN Español show (USA & Latin America), as part of a series dedicated to social issues (aired 2 May 2014), and in TVE's (Spain's foremost television network) Rare Disease Day 'Telemarathon' (aired 2 March 2014),  which jointly reached millions of viewers.

In December of 2008 I lost a dear friend, the artist and poet Mauricio Saravia, to McCune Albright syndrome. He was 38.
To commemorate his grace, artistic talent and courage, I wrote a small illustrated children's book entitled: "Mauricio of Uruguay". This book is available on Lulu.com and I have donated 100% of its profits to EURORDIS and NORD. 

Finally, during these vital past months, I have privately developed and fostered a personal dream: A new science has emerged over the past decades: "Complex Systems" represents a new approach to science by investigating how relationships between parts give rise to the collective behaviours of a system. New knowledge generation by a "big data" approach could identify common underlying causes of rare diseases. Thus, a study that looks at how all 6000-8,000 identified rare diseases behave as a whole could yield common factors that might greatly accelerate medical research. Over the past months, I have pursued sponsorship for this project, although the complexity of this nascent science is difficult to communicate. I shall nevertheless continue my quest to achieve this very personal dream!

Thank you,

Sean Hepburn Ferrer


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