EHA Adolescent and Young Adult Patient Advocates

March 20, 2024
Many blood diseases occur in later phases of life, but in each of them, there are also many young patients who need to deal with these conditions, symptoms and therapies. These patients have specific needs in terms of treatment and research, being able to perform at school or work, fertility, survivorship as well as sexual and mental health.
In the European Patient Advocacy Institute they have been running an exciting training programme of the European Hematology Association (EHA) for adolescent and young adults (AYA) patient advocates. This weekend, they had the 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.
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 the 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 and virtual sessions.
During the meeting they jointly identified key unmet needs of AYA patients in blood diseases, and brainstormed about potential advocacy actions that could address those. They also held a training sessions about patient advocacy and using evidence, and had young hematologists presenting about malignant and non-malignant blood diseases.
We will see them during the EHA congress in June and we look forward to more discussions !