“If I had to use one phrase to describe the collection of stories which appear in this book, I would use: lives full of life”. This is how the open letter written by Fernando Torres for the prologue to the book ‘Manual de Humanidad’ (The Manuel of Humanity) begins.

‘Manual de Humanidad’ is the title of the book which brings together 26 unique personal stories from 26 people sufferers of a rare disease. The stories are accompanied by detailed descriptions by 29 different doctors about each of the diseases.”

The prologue from the striker, which is written for those suffer directly and indirectly (patients’ family) from the disease, is a further example of Fernando Torres’ support in the fight against rare diseases which affect 3 million people in Spain.

“If I had to use one phrase to describe the collection of stories which appear in this book, I would use: lives full of life. Although we are referring to suffering and disease, each one of the personal stories is an amazing example of hope and courage, with each story personalised with the name of the sufferer.”

“I got the opportunity to meet a person suffering from a rare disease and I can assure you that the person’s daily struggle is an excellent example of an amazing desire to live life to the full. They are always looking forward to the next day, and with it, a fight to live life with a rare illness.”

“A sportsman and a person suffering from a rare disease both share things in common. We both always look ahead, we try to better ourselves every day and our achievements are down to pure determination, dedication, hard work and a will to succeed. The main and most important difference is that a sportsman’s goal is to compete in the world of sport, and the goal of a person suffering from a rare disease is to find a positive diagnosis or a treatment which will give them hope and help improve their quality of life.”

“This book is just the first step on the way to a fairer World. The book is a reward to those who have shared their story with a society hoping that society will better understand their plight… and at the same time the sufferers of a rare disease are also hoping that their dreams come true.”

Fernando Torres collaborates with FEDER, which is one of the 19 member rare disease national alliances that make up European Organisation for Rare Diseases (EURORDIS). FEDER looks to raise awareness of rare diseases. One of their aims is to see a decrease in deaths from rare diseases in babies under one year old (35%), and also in the number of deaths in children between 1 and 5 years old (10%).

The main message is to consider the necessity of creating a Rare Diseases Global Pact with the consensus and commitment of the main actors involved: national and regional administrations, scientific societies, professional associations, the pharmaceutical industry, patients organisations, media and civil society- in order to translate the success of the Pact into specific measures for the victims: social integration, and equity in access to care and treatment.