EBMT PAC Mer 27 Déc 2023 - 17:03Hello all,
In January 2023, members of the “Life after HSCT for Autoimmune – Patients ONLY Support Chat” Facebook group were many to take part to the Advostudy initiated by the Patient Advocacy Committee of the European society for Blood and Marrow Transplantation (EBMT) and the Admins of the group, with AIMS charity support.
Our goals were to defend MS patients’ interests and to voice their experiences before, during and after HSCT within the scientific community.
Were they achieved? Key findings of the Advostudy were presented at EBMT annual meeting (April 2023), at ECTRIMS-ACTRIMS joint annual meeting (October 2023) and its Abstract was published in the Multiple Sclerosis Journal. So patients did voice their concerns within the hematologists and the neurologists communities.
Have we been heard and, if so, with what effects?
What is sure is that some researchers and specialists have been very impressed by the strength and rigor of the international Facebook HSCT network, that they can better understand the range of motivations and experiences of transplanted patients and that they acknowledge that people with MS contribute to drive improvement in the access to HSCT.
Here is uploaded the whole Advostudy report. It is a dense document combining quantitative data, testimonials from HSCT veterans and an advocacy section. Thank you to ForSeps for hosting it.
May this Advostudy be useful to those who are considering HSCT and would like to have an overview of what it is like to go through the transplant obstacle course, from the day you first hear about it to the day you can review your journey.
Solidarity greetings.
EBMT Patient Advocacy Committee
In January 2023, members of the “Life after HSCT for Autoimmune – Patients ONLY Support Chat” Facebook group were many to take part to the Advostudy initiated by the Patient Advocacy Committee of the European society for Blood and Marrow Transplantation (EBMT) and the Admins of the group, with AIMS charity support.
Our goals were to defend MS patients’ interests and to voice their experiences before, during and after HSCT within the scientific community.
Were they achieved? Key findings of the Advostudy were presented at EBMT annual meeting (April 2023), at ECTRIMS-ACTRIMS joint annual meeting (October 2023) and its Abstract was published in the Multiple Sclerosis Journal. So patients did voice their concerns within the hematologists and the neurologists communities.
Have we been heard and, if so, with what effects?
What is sure is that some researchers and specialists have been very impressed by the strength and rigor of the international Facebook HSCT network, that they can better understand the range of motivations and experiences of transplanted patients and that they acknowledge that people with MS contribute to drive improvement in the access to HSCT.
Here is uploaded the whole Advostudy report. It is a dense document combining quantitative data, testimonials from HSCT veterans and an advocacy section. Thank you to ForSeps for hosting it.
May this Advostudy be useful to those who are considering HSCT and would like to have an overview of what it is like to go through the transplant obstacle course, from the day you first hear about it to the day you can review your journey.
Solidarity greetings.
EBMT Patient Advocacy Committee
- Fichiers joints
EBMT PAC - Advostudy HSCT & MS - 2023.pdf - Vous n'avez pas la permission de télécharger les fichiers joints.
- (4.3 Mo) Téléchargé 2 fois
