The book "Rare Diseases, Manual of Humanity" was presented today at a ceremony in which they participated Carmen Moreno Porcel, Association Technique D'Genes; Naca Eulalia Perez de Tudela as President of the Association for Rare Diseases in the Region Murcia D'Juan Carrion Tudela Genes and Delegate of the Federation for Rare Diseases in the Region of Murcia.
Spanish
Powered by Crescent, in collaboration with the Spanish Federation for Rare Diseases (ERDF) and the editorial Loquenoexiste, this project has the personal stories of nearly thirty patients suffering from rare diseases (RD) than with their stories attempt to teach readers to appreciate life.
The Spanish Federation for Rare Diseases (ERDF), involved in the development of the work and beneficiaries of copyright, ensures that these stories are written from the heart of people who love life despite its difficulties.
Loaded with great emotion, the texts become a guide for overcoming everyday problems, a manual obstacle avoidance.
The usefulness of this book is completed with specialist doctors prestigious texts have been devoted to each of the diseases.
The medical writings deal with the disease explaining their causes, symptoms and treatments, with simple language understandable to any reader.
The text of the presentation of the work is the footballer Fernando Torres, one of the best strikers in the world and player, currently of Liverpool FC Torres is a great supporter of the Federation and did not want to miss the opportunity to be part of this work.
The foreword is written by Antonio M.
Bañón, director of the research group ECCO (Critical Studies on Communication), project R & D ALCER (linguistic and communicative analysis of rare diseases in Spain) and member of the Board of ERDF.
The book has two annexes: the first provides useful information about rare diseases (description, incidence, major problems, etc.), The second contains the contact details of associations of patients from ERDF.
Currently, about 30 million people are in Europe one of the more than 7,000 rare diseases (with a prevalence below 5 per 100,000 people affected) typified in the world, 80 percent of which are genetic .
As shown these are some of the testimonials can be found in the book:
- Mónica Martínez (Guipúzcoa).
Stiff Man Syndrome.
"This experience has taught me many things friendly, many.
One is that the arrogance of believing himself immune to any fatality of life is the greatest weakness of human being. "
- José María Campos (Sevilla).
Arnold Chiari.
"The child who gave life to seventeen years, now has forty-six, is married with a son."
- Naca Pérez de Tudela (Murcia) Berardinelli Lipodystrophy, Congenital.
"We learned so much from Celia ... That silence tells us that love is to realize that surrounds us, to learn is to fight for something, etc.
We have learned in life. "
- Susana Blasco (Barcelona).
Vici syndrome.
"This letter, unlike others, not be lost in the oblivion of a table of the Administration.
This is, above all, special.
It is addressed to you, caring people.
It's special because, this afternoon, Alex's smile has given me enough courage to tell them what our life and put on it fondly.
Once again, I've done for him, as everything I do. "
