EHA Adolescent and Young Adult (AYA) Patient Advocates Training Program

EHA Adolescent and Young Adult (AYA) Patient Advocates Training Program   Back in January we nominated two young ITP patients from the ITP Support Association to the EHA Adolescent and Young Adult (AYA) Patient Advocates Training Program. It was congratulations to Rhona Bowie and Ella-Sophia Ellis who have both been successful in being selected as part of this prestigious training programme. The initial in-person training took place over two days in Munich Germany in March. The following is a report on the training weekend from Jan Geissler who was leading the training on behalf of the EHA. FYI the EHA training programme for adolescent and young adults (AYA) patient advocates kicked off in the last two days. This weekend, we had our first meeting with 15 young patient advocates from CML Advocates Network, Global MPN Advocates Network, Acute Leukemia Advocates Network, CLL Advocates Network, Myeloma Patients Europe (MPE), ITP Support Association, European Sickle Cell Federation (ESCF) and the PNH Global Alliance. As you know, the objective is to strengthen patient advocacy groups to better address the specific needs of young patients and survivors affected by different hematological diseases. The training aims to equip our trainees with the essential knowledge and capabilities needed for impactful advocacy and foster the collaboration with the EHA AYA Taskforce. The training programme is designed as a hybrid model of in-person virtual sessions. Over the last two days the advocates have jointly identified specific needs e.g. in terms of treatment and research, being able to perform at school or work, fertility, survivorship as well as sexual and mental health. We brainstormed about potential advocacy actions that could address those. We also held a training about patient advocacy and using evidence and had two young haematologists training about malignant and non-malignant blood diseases. What an amazing group of young patient advocates. Thanks to those who nominated these amazing advocates! Next we‘ll have two virtual sessions and then a face to face during the EHA congress to do further trainings and poster walks.