We are delighted to announce the publication of a book born of the desire to promote and highlight the results of research work, by winning teams from the Rare Diseases Foundation's "Human and Social Sciences and Rare Diseases" call for projects.
This project embodies our commitment to those living with these complex and often misunderstood diseases. 🤝
Rare diseases pose major challenges (diagnostic errancy, uncertainty regarding the course of the disease, risk of genetic transmission...), which have significant repercussions for the sufferer and the entire family constellation. 💡
Under the aegis of the Fondation Maladies Rares, the research presented in this book aims to better understand the individual, family and social consequences specifically linked to rare diseases. They offer valuable insights into quality of life, identifying activity limitations, restrictions on social participation, support needs, and people's rights, including the right to be involved in therapeutic decisions. 🧠
What makes this book unique is the collaborative, participatory approach that underpinned it. Each chapter reports the salient findings of research carried out by interdisciplinary teams, with the involvement of patient associations right from their conception. This innovative approach reflects our commitment to a better understanding and more comprehensive management of rare diseases. 🤝
We hope this book will help to improve the care and life course of people with rare diseases.
This book is aimed at families, professionals in the field and researchers and students in SHS.
The book is now available, and we invite you to discover it and share it widely. To find out more and get your copy, click here: https: //www.editions-eres.com/ouvrage/5108/maladies-rares-lapport-des-recherches-en-sciences-humaines-et-sociales
A huge thank you to Professors Marcela Gargiulo and Jean-Louis Mandel for their masterly direction in writing this book, and to our generous sponsors and institutions who supported the research projects presented in this book: The IRCEM Group Corporate Foundation(Nathalie S. H. Coulon & Marie-Christine Ostuni), the Caisse nationale de solidarité pour l'autonomie and the French Ministry of Health
Thank you to all those who contributed to the production of this book, and to those who continue to support our mission. Together, we can make a difference. 🌟