Noëlle Tassy (EBMT Patient Advocacy Committee)

Noëlle Tassy has had multiple sclerosis for more than 30 years and over the past decade the disease has had a major impact on her life. She received 2 HSCT (2017 in France - 2019 in Russia) which succeeded in stopping MS progression but she keeps facing severe motor sequelae. As so many transplanted people with MS over the world, she wishes she could have had HCST before this chronic debilitating illness did its irreparable damage.

Noëlle is a member of EBMT Patient Advocacy Committee and of EMSP Patient Community Advisory Boards. She also operates as a graduated Expert Patient in the therapeutic education programme on multiple sclerosis at Pays d'AixHospital.

Noëlle matches her advocating activities with studies for a doctorate in Philosophy at Aix-Marseille University. She is also the author of a series of blog articles on the French online newspaper Mediapart: “Autologous bone marrow transplant for the treatment of multiple sclerosis: a point of contention between patients and neurologists”.

Since January 2023, the EBMT Patient Advocacy Committee along with the Administrators of the “Life after HSCT for Autoimmune (Patients ONLY post-HSCT support)” Facebook group, have organized the capitalization of the solid experiential knowledge held by transplanted patients with MS, and its sharing with scientific and patient communities. After a first presentation of the main breaking findings of this Advostudy at ECTRIMS 2023, these results will be shared publicly at AIMS Summit.