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about

The Project

Myelodysplastic syndromes (MDS) are a diverse group of bone marrow disorders characterized by ineffective production of blood cells. Among the three types of blood cells that are produced in the bone marrow -- red blood cells, white blood cells and platelets, MDS can affect one, two, or all three. MDS usually appears at a rather late stage of life, impairing elderly people’s quality of life because of a wide range of associated complications. Despite research efforts and recent advances in patient management, MDS poses significant challenges to patients and their families in terms of their health and lifestyle.

Global awareness and action are needed to achieve better understanding, better diagnosis and better management, in order to help address the needs of the patient community, despite their limited lifespan.

From this pressing context emerged the idea of MDS Voices: an international human adventure initiated in 2013, a journey designed to collect and share individuals’ stories about MDS. The web documentary here features testimonies of patients and physicians encountered in this journey. It shows the diversity of myelodysplastic syndromes, and

the ways people cope with this disease in daily life, in different parts of the world. Taking an interactive form, this project is designed to raise awareness through a series of portraits showing how MDS impacts on people’s daily life.


Human ties and dialogue at work

MDS Voices is also about the people who have united efforts and collaborated across geographical boundaries, throughout this global journey:
--• Project managers interacted with local MDS experts, who showed strong dedication: first in drawing willing patients in the project, then in taking part in interviews, talking about their experience, and finally in providing scientific highlights and ways to talk about the disease, to contribute to better understanding.
--• Local advisors and coordinators worked together to enable experts and patients in each country to understand the nature and importance of this project, arranged the preliminary encounters, and provided onsite reporting.

The moments of privileged exchange between patients, the interviewer and the photographer gave birth to the rich and sensitive material that you can now discover on this website. Throughout its development, the MDS Voices project has been a sharing experience, conceived to give sensitive, human perspectives on the disease, in order to allow better understanding, and generate more actions.


Partners: Novartis and the Iron Health Alliance

Novartis Oncology established the Iron Health Alliance in 2011 as a way to help improve the standard of care for people diagnosed with chronic iron overload. The Iron Health Alliance is a partnership that raises the standard of care of chronic iron overload by supporting education, diagnostic access, and patient management for optimized outcomes.

The Iron Health Alliance provides support through three core pillars of care to improve outcomes:
--• Increased awareness and knowledge of diagnostic methods to detect and measure iron overload
--• Increased awareness of anemias
--• Increased awareness of the importance of treatment adherence

It is as part of this dynamic that the Iron Health Alliance has given impulse to MDS Voices, allowing Novartis to sponsor this web documentary, which is an important step towards global MDS awareness.


Acknowledgements

This adventure would not have been possible without:
--• the six patients, whose names will not be disclosed in respect for their privacy, who agreed to share their experience as part of this project of dialogue and international communication
--• the local MDS experts, whose human and scientific involvement was remarkable:
-----Dr Shanti Amé, Strasbourg, France
-----Dr Tereza Cristina Bortolheiro, sao Paulo, Brazil
-----Pr Pierre Fenaux, Paris, France
-----Dr Karen Gunther, Johannesburg, South Africa
-----Pr Detlef Haase, Göttingen, Germany
--• those who allowed the encounters to take place in the best conditions, particularly the local Novartis teams, whose support made this project possible.