“Life with Epidermolysis Bullosa” by Jo-David Fine and Helmut Hintner, For mere informasjon klikk her
May the spread of this book around the world help to improve medical care for people who live with Epidermolysis Bullosa. If you want to order another copy you can do this online, klikk her
International Rare Disease Day 2009, the European Organization for Rare Diseases (EURORDIS) launched "The Voice of 12,000 Patients." This book presents the analysis of data collected through surveys on the experience and expectations of patients regarding access to diagnosis and health services. The book details the methodology, overall results, results by country and by disease, and conclusions.
To download the entire book electronically, or to see other-language versions, click here
Last ned her for å få EB chapter fra denne boka
The Official Patient's Sourcebook on Epidermolysis Bullosa: A Revised and Updated Directory for the Internet Age (Paperback) by Icon Health Publications (Author)
Vil du bestille boka klikk her
Living with Epidermolysis Bullosa, written by, Silvia Corradin 2007.
Has first-hand accounts written by parents and patients who are living or have lived with EB, and was compiled to help people in general understand how it is like to truly live with every form of Epidermolysis Bullosa; from the milder Simplex variants, who are nonetheless not simple to live with, to the more lethal, namely Junctional, whose patients usually succumb to before their first birthday. The stories you will read are from proud parents, or patients and their struggles and how they are coping. Some stories are sad, some are encouraging, and everything in between.
Vil du bestille boka, klikk her
Special Mommy Chronicles, by Silvia Corradin
The Special Mommy Chronicles is a column written by Silvia C., the mom of a Special Need child (son suffers from the Recessive Dystrophic form of Epidermolysis Bullosa) which offers insights, stories and struggles that go along in raising special kids.
Bestill boka her: http://www.lulu.com/content/336796
Bilde tatt av Risto, Helsingfors EB2008, Finnland
