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. Our taskforce for AYA was created to fill that gap.  

The taskforce is responsible for:   

  • Overseeing interactions with AYA stakeholders and EU policymakers   
  • Developing an EHA strategic agenda for AYA and its implementation
  • 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 [email protected].  

EHA’s first AYA Strategy

Recognizing that there are critical gaps in AYA care provision across Europe, the EHA Board approved a strategic agenda to address those gaps in November 2025.

The EHA AYA strategy emphasizes collaboration and inclusion of patients’ perspectives to achieve five interrelated goals:

1. Analysis: Gaining a deeper understanding of the current landscape of AYA care in Europe

2. Improving standards of care: Collaborating with key stakeholders to develop consensus recommendations for optimal AYA care

3. Policy: Advocate for AYA needs with European stakeholders and policymakers

4. Education: Increase training and resources for healthcare professionals caring for AYAs

5. Research: Support research focused on AYA-specific challenges

To integrate AYA priorities within EHA and coordinate key activities across policy, education, research, and standards of care, the strategy provides for the establishment of a multidisciplinary, overarching AYA Specialized Working Group (SWG).

Details of the strategy were published in a HemaSphere Perspective.

Learn more about the strategy

Mapping AYA hematology care across Europe   

 In 2024, a survey of healthcare professionals was conducted to: 

  • Shed light on country specificities  
  • Signal challenges 
  • Highlight unmet needs in care for AYA patients with hematologic diseases across Europe 

Results from the survey were published in eClinicalMedicine—an open access clinical journal, owned by The Lancet.

Read the survey results

The results were used by the taskforce to identify areas for future EHA activities and advocacy, and informed the development of the EHA AYA Strategy.

Patient advocates training program  

The initial taskforce members included clinicians and nurses but lacked AYA patient advocates that would provide the patient perspective in the activities carried out by the group.​   

To address this gap, and recruit and train AYA patient advocates, EHA commissioned a training program for AYA patients or survivors aged between 20–30.   

This 2024 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, participants chose two of their peers to join the EHA AYA Taskforce.

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