PATIENTS & PATIENT REPRESENTATIVES
G & CTI PATIENTS & PATIENT REPRESENTATIVES
Our objective for the “Patients and Patient Representatives” college is to build a vision and a common ambition on the role of patients in the challenges of gene and cell therapy. In order to achieve this objective, our missions are to promote education, access to information and support for patients who are at the heart of these medical innovations.
This college is therefore essential for the think tank because it makes it possible to put patients at the center of the decisions and actions of the G & CTI.
President of a patient association (LHF Espoir) on the rare disease of Familial Lymphohistiocytosis, I discovered that innovative therapies, such as gene therapy, offer hope for a cure for many patients with rare diseases.
When I learned that G & CTi was going to be launched, it seemed obvious and essential to me to contribute to this initiative as a founding member and to represent patients in the construction of a common response to the challenges of gene and cell therapy.
PATIENT COLLEGE PRESIDENT AND PATIENT REPRESENTATIVES
President of an association supporting patients with familial lymphohisctiocytosis (LHF Espoir)
In addition to this, you will need to know more about it.
EVERYBODY HAS A WORD TO SAY
I participated in the creation of the SOS GLOBI Nouvelle-Aquitaine association, in order to provide support to patients with sickle cell disease and thalassemia in the Nouvelle Aquitaine region. I am also, newly elected, President of the Federation of associations of sickle cell and thalassemia patients which brings together 19 associations located throughout France.
I am delighted to be part of the Patients and Patient Representatives College, and to work in collaboration with the LHF Espoir association, where I could bring my objective and professional perspective.
President FMDT SOS Globi
Member of the patients' college and patient representatives
THE COLLEGE'S 2021 OBJECTIVES
Expand the college of patients and patient representatives with new members.
Build a vision and a common ambition on the role to play of patients in the democratization of innovative therapies.
COURSES OF REFLECTION
Role of patients in clinical trials.
Better represent patients in the economic model and funding issues.
Promote education and support for patients.
Allow patients access to gene and cell therapies, accompanied by a good understanding of them.