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A Rare Person

The series of short documentaries that make us meet people with rare diseases.

About the project

"A Rare Person" is a series of short documentaries that make us meet people with rare diseases: during an entire day, we follow them and discover their diseases, but, mostly, their exceptional personalities: combative, creative or sporty !


 

If the diseases are said to be "rare", people having them are many! And yet ... nobody talks about it.
To make the general public know these diseases, through "portraits" of people having them, is the main purpose of the series.

With your contribution,
let’s create and make together the first episodes of the series !

Each episode presents a day of a person with a rare disease: immersed in his daily, we discover his family life, his work, his passions, but also the difficulties related to his illness, his questions, his hopes.
These portraits are an opportunity to understand and measure the impact of rare diseases on the lives of over 350 million people worldwide !

8,000 rare diseases, it is the opportunity to meet 8,000 rare persons and therefore make 8,000 documentaries!
And to highlight these diseases, to interest researchers and funders, and to hope, one day, to cure them!

After dozens of meetings, we decided to introduce you to Emily, Jean-Luc, Charly and Peter, four exceptional and engaging personalities that will be honored in the first episodes of the series.

Emilie, 30 

Expatriate in Barcelona, Spain, Emilie suffers
from dystonia, a disease that causes a disorder
of muscle tone.

However, this does not prevent her to have a
drink with friends, eating out, or partying
in night clubs!

More information about the disease...

Jean-Luc, 51

Living in Oostende, Belgium, Jean-Luc is suffering from AKU, a disease affecting the joints.

But it is wrong to believe that he will stop doing crafts, cycling, or play petanque!


More information about the disease...

Charly, 6 

Living in the north of France, near Amiens,
Charly has the Brittle Bone Disease, which
causes a hyper fragility of the bones.


This little boy full of life is a trampoline buff!

More information about the disease...

Pierre, 35 

Living in central Paris, Pierre suffers
from FSH Muscular Dystrophy, a disease that weakens the muscles.

Yet he has a high responsibility position in a large organization, and find the energy to lead a whole team!

More information about the disease...
 

The project of the documentary series actually began in January 2015.
Three months later, "A Rare Person" is making great strides and grows stronger day by day!

Today, "A Rare Person", it is :

For more information on the broadcast of the episodes of the series, go here: www.une-personne-rare.fr/diffusion/

Thanks to you, contributors, we hope to shoot the first episodes of the series this summer for a broadcast from the fall 2015!

 

"A Rare Person" is a collaborative project. It can not exist without you.

We will at first create the 4 first episodes of the series in order to launch it.
We have already found a production company, an enthusiastic team of skilled professionals, filming and editing equipment, partners... But there is still a part of the budget missing.

Three sources of funding :

 

What are the funds for?

To pay professionals that allow a documentary series of quality to emerge.

The production company and the partners funded the first and main part of the project. To create a series of quality (and meet the technical requirements of broadcasters) we are surrounded by 17 renowned professionals who work (for several weeks) or who will work on the project (from the production assistant to the chief editor via the d.o.p). They all agreed to adjust their wages (due to the nature and spirit of the project) and we thank them!

For "castings", the trails, the 8 to 10-day shoot, the 25 days of editing, the mixing, the calibration, the communication, the music, the credits, our needs are 17 000 euros.

 

Igor Pejic - Writer-director  

Igor Pejic is suffering from a rare disease, the FSH Muscular Dystrophy, since forever. Despite the evolution of his illness, which makes, in particular, walking very difficult, his passionate for audiovisual manages to turn his passion into his profession.

Today, he decides to use his writer-director talents to speak of his rare disease and others, aware of the importance of making the world know these pathologies :

""When searching information about my condition, I discovered a (very) small part of these 8000 other rare diseases. I noticed at the time that a surprisingly large number of people were affected by these diseases (1 out of 20!), besides counting their colleagues, friends and families, who, in some way, also live with them. But no one ever talks about them. Apart from the Telethon, 2 days a year, there is no media that is interested in the thing.

This series must exist to allow to link all the forces, between all actors from the "world of rare diseases", but also make the problem known to the greatest number of people, collect financial and human resources, so that the joint effort can overcome these diseases as soon as possible!

The series carries an educational, human, political, and scientific message. But before all this, it carries a message of hope... "

Example of his work :

PFor more information, go here:  www.igor-pejic.com

From the producer to the production, from the director to the communication manager, we are 5 to unite our skills around Igor and are passionate about this project :

  • Producer : Benjamin Gourio 
  • Communication : Clarisse Piel
  • Development : François Chemel
  • Production : Eric Lambert & Eglantine Sohet

To learn about us, our journey, and our motives, visit the series' website: http://une-personne-rare.fr/equipe/

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Follow us :

           

www.une-personne-rare.fr
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