RARE LIVES – The meaning of living a rare life

This feature aims to investigate and document what are the needs and the everyday life of the people suffering from rare diseases. Discovering that behind every case of a rare disease lurks a real life rare, made of force , stubbornness , suffering, but also of great joy and discovery.

“As a drop of water falling into a pond creates ripples that spread over the entire surface , so my rare disease called CIDP , propagates the will to live , courage, love , positivity and willingness in every moment of my life “.  “A person suffering from a rare disease, is as the seed of a plant that travels for miles by the wind and falls unexpectedly on a land which is almost totally unprepared to receive it. Nevertheless the seed is strong and can not wait to grow up and become a tree. The land of the family feeds him and learn to know, to accept, to support it and to devote themselves to its growth with all the patience and dedication that are necessary.”

This story has been made to celebrate the world day dedicated to rare diseases by 28 February. The threshold of incidence of rare diseases is the the 0,05%, according to EU Currently rare diseases are estimated between 8 and 9000, this means that although each rare disease have a lower incidence of 0.05% of the population, the incidence of all rare diseases and dramatically higher: about 30 million patients throughout Europe.

The countries involved in this project are: Italy, the Netherlands, Poland, Romania, Portugal, France and Denmark.

Milano, Italy – www.echophotoagency.com

Every action, every event, leaves behind a trace. An ECHO. Over these human territories, echo spreads. The photojournalists part of Echo Agency tell these stories to the world, narrating the behind the scenes and the consequences, knowing that all happens for a reason, and understanding this means getting to the bottom of the cause.

Roma, Italy – www.uniamo.orgwww.malatirari.it

UNIAMO F.I.M.R. is the Italian Federation of Rare Disease associations committed to protect the rights and improve the quality of life of patients and their families. It is an Association of Social Promotion, created in 1999 and is the Italian National Alliance in the Council of Alliances of EURORDIS.

www.genzyme.com

Sanofi Genzyme has pioneered the development and delivery of transformative therapies for patients affected by rare and debilitating diseases for over 30 years. With a focus on rare diseases and multiple sclerosis, we are dedicated to making a positive impact on the lives of the patients and families we serve.