Adolescents and young adults (AYA)
Spotlight on AYA
Adolescents and young adults (AYA) with hematologic diseases are a unique group with special characteristics and needs. In recent years, the challenges related to the management of AYA (particularly in relation to cancer) have increasingly been recognized. However, more knowledge, awareness, and a continuous collaboration between pediatric and adult hematologists are needed to better address the specific needs of AYA with hematologic diseases.
AYA Taskforce
Prior to 2022, EHA did not have a formal group of experts on this topic. The taskforce for AYA was created to fill the gap.
The taskforce is charged with the following tasks:
- Overseeing interactions with AYA stakeholders and EU policymakers
- Proposing a strategic EHA approach to AYA care
- Participating in the ENTYAC network
- Providing the AYA perspective on other EHA initiatives
The EHA AYA Taskforce is coordinated by the European Affairs department. For more information, please contact europeanaffairs@ehaweb.org.
Mapping AYA hematology care across Europe
A recent survey was conducted to shed light on country specificities, signal challenges, and highlight unmet needs in care for AYA patients with hematologic diseases across Europe.
The results will be used by the taskforce to identify areas for future EHA strategic activities and advocacy.
Patient advocates training program
The initial taskforce members included adult and pediatric hematologists, and specialist nurses, but lacked AYA patient advocates that would provide the patient perspective in the activities carried out by the group.
To address this gap, recruit, and train AYA patient advocates, EHA commissioned a training program for AYA patients or survivors aged between 20–30.
This program was developed and delivered with the European Patient Advocacy Institute (EPAI). It was designed to equip participants with the knowledge and capabilities needed for impactful advocacy and to foster an easy integration within the taskforce.
Following the training, two of the alumni, selected by the participants from their midst, joined the EHA AYA Taskforce.
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