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Spotlight on rare diseases

What is essential becomes visible to the eyes: “The Rarest Ones” featuring the #ICareAboutRare campaign. Spotlight on rare diseases.

  • A video of extraordinary cinematographic power that puts together the peaks of L’Aquila with the beaches of Lanzarote, the woods of the Apennines with the grottoes of the Canary Islands in order to describe a surprising parallelism: the story of people and animals with no other choice but to live as “rarities”.
  • It is a project developed by Dompé, biopharmaceutical company committed to seeking therapeutic solutions for currently untreatable rare and orphan diseases, on the occasion of the World Rare Disease Day under the patronage of UNIAMO F.I.M.R. Onlus.
  • The face of the #ICareAboutRare campaign is Tommaso, a 22-year-old Venetian guy: an extraordinary example of the strength and determination of the people who, like him, find themselves having to live with a rare disease.
  • The video is available for viewing and sharing on social networks on Dompé YouTube channel, at the link http://youtu.be/Tmv2LKNeEoI

Milan, 23 February 2015. Imagine a wolf, a seal, a hawk, an eagle, a penguin, a panda or a polar bear: all species at risk of extinction. It is something that attracts our attention and generates often conflicting emotions, ranging from tenderness to indignation.

Now imagine another condition that may be considered closer to home: the image of a patient affected by one of the so-called rare diseases. These are conditions that frequently receive little attention from the media and are still little known by the general public. More than 7,000 rare diseases have so far been diagnosed, of which 80% have a genetic origin and 75% occur during childhood. It is estimated that in Europe, 6-8% of the population is affected by a rare disease, i.e. about 24-36 million people1, while in the US it is estimated that people with a rare disease are about 25 million2: a still largely “hidden world”.

It is for this reason that, under the patronage of the Italian Federation for Rare Diseases, UNIAMO F.I.M.R. Onlus, the biopharmaceutical company Dompé promoted the making of the video “The Rarest Ones”, on the occasion of the World Rare Disease Day. The main character is Tommaso Galluppi, a 22-year-old with a rare disease who has become the official ambassador of a campaign aimed at drawing attention to the often under-estimated subject of the people who have to cope with one of these diseases every day.

Tommaso brings to the screen an evocative analogy between two worlds, almost as if the animals have become “endorsers” in a sort of virtuous relay. A succession of extraordinarily cinematographic images, sounds and settings are brought together in the figure of Tommaso and the claim that To be rare like me is to be ignored. A message that is intended to shake our consciences and invite us to reflect, a means of opening of our eyes.

Created by the agency Saatchi & Saatchi, directed by Roberto Saku Cinardi and produced by Al One, the video – shot in the highly attractive scenery of Lazio, Abruzzo and the Canary Islands – reflects Dompé commitment to remaining in the forefront of the research for innovative therapeutic solutions for rare diseases.

“We are particularly proud of this campaign, which is intended to shed light on the world of rare diseases by taking advantage of the enormous potential of the web in order to draw greater attention to the subject and increase public awareness. The aim of this video is to underline once again our everyday commitment to patients with serious and currently untreatable health problems,” - explained Eugenio Aringhieri, CEO of the Dompé Group. “My thanks go to UNIAMO F.I.M.R. Onlus for having supported the project, but above all to Tommaso, an extraordinary example of the strength and determination of the people who, like him, confront having a rare disease with dignity and courage” .

“Our Federation of Patients’ Associations has always been committed to improving the quality of life for people with rare diseases; that is why we welcomed this project because it conveys two very strong messages: the first one, addressed to the public opinion for a greater awareness on this theme of public health priority; the second one, dedicated to the community of people suffering from a rare disease, confirming that the patient can and should be the protagonist of his health choices” - explained Renza Barbon, President of UNIAMO F.I.M.R. Onlus.

The video, which is accompanied by the hashtag #ICareAboutRare so that it can be shared on the web and social networks, can be watched on Dompé YouTube channel together with other backstage content associated with the campaign.

“I had no hesitation in enthusiastically agreeing to take part in this video. It was not easy because I had to bare not only my body, but also the “soul” of my personal experience with the world of rare diseases. I found myself shooting in the desert, in the snow, in grottoes and in water," commenta commented Tommaso Galluppi, protagonist of "The Rarest Ones". “I was looking for a “rock” way of giving voice to people like me who struggle every day – and I found it in this project”.

To watch and share “The Rarest Ones”:http://youtu.be/Tmv2LKNeEoI

1 Source: UNIAMO Federazione Italiana Malattie Rare Onlus, 2015

2Source: http://www.ncats.nih.gov/about/faq/rare/rare-faq.html