Rare Diseases Europe (EURORDIS) has announced a call for applications to join its Digital Health and Data Advisory Group (DAG). The group aims to provide expert advice on digital health policies and procedures, recognizing and acting upon opportunities for individuals living with rare diseases. The DAG plays a vital role in advising EURORDIS on all aspects of digital health, from policy development to practical implementation. By leveraging the personal experiences of its members, the group ensures that the voices of patients and their caregivers are heard and considered in the decision-making process. This initiative is part of EURORDIS’s broader effort to enhance patient engagement and promote patient-centric approaches in healthcare.
Members of the DAG will have the opportunity to influence strategic decisions at the highest levels, helping to shape the future of e-health for the rare disease community. The group has already contributed to several significant projects, such as FACILITATE, JARDIN, and Screen4Care, demonstrating its impact and importance. EURORDIS is seeking individuals with a strong interest in digital health, fluency in English, and active membership in the EURORDIS network. While prior experience in digital health is desirable, it is not mandatory, as EURORDIS offers capacity-building opportunities throughout the mandate.
Joining the DAG is a unique opportunity to make a meaningful difference in the lives of people with rare diseases. Members will work closely with EURORDIS to identify and seize opportunities to improve e-health policies and practices, ultimately enhancing the quality of care and support for patients. This call for applications underscores EURORDIS’s commitment to fostering a collaborative and inclusive environment where the insights and experiences of patients are valued and utilized to drive positive change in healthcare.
Shape the Future of Digital Health Policies for Rare Disease Patients
EURORDIS is expanding its team of volunteers by inviting applications for its DAG. This group plays a crucial role in advising EURORDIS on digital health policies, leveraging members’ personal experiences to enhance patient engagement and patient-centric approaches across European projects. The DAG’s mandate is to provide expert advice on all aspects of digital health policies and procedures. The group has significantly contributed to shaping EURORDIS’s positions and influencing strategic decision-making. Key projects like FACILITATE, JARDIN, and Screen4Care have benefited from the group’s insights, ensuring patient views are represented at the highest levels.
The mission of the DAG is to identify opportunities to influence strategic decisions and advocate for the needs of patients with rare diseases. By providing valuable insights, DAG members help EURORDIS better assess and represent patient perspectives, ensuring that e-health policies align with patient needs and expectations. Participation in the DAG is open to all full and associate EURORDIS members who meet the following criteria:
- Strong interest in digital health (mandatory)
- High level of English fluency (mandatory)
- Active membership in the EURORDIS network (mandatory)
- Attendance at a data and digital training organized by a patient organization (desirable)
Enhance Your Skills and Influence Digital Health Policies for Rare Diseases
While experience in digital health is desirable, it is not required. EURORDIS offers capacity-building opportunities throughout the mandate to enhance members’ understanding of digital health issues. The term for DAG membership is three years, with yearly confirmation based on participation and commitment. Members are expected to commit an average of 4 hours per month, including availability for 4-8 e-meetings and up to 2 face-to-face meetings annually. EURORDIS will coordinate DAG activities, supported by Veronica Popa, the Digital Patient Engagement Manager.
EURORDIS’s call for applications to the DAG highlights the importance of incorporating patient perspectives into digital health strategies. This initiative aims to drive impactful conversations and strategic decisions that benefit the rare disease community. Interested candidates can submit their applications via the online form provided by EURORDIS. This is an excellent opportunity to contribute to the advancement of e-health and improve the quality of life for people living with rare diseases.
For a suitable picture to attach to this news, consider an image depicting a diverse group of people in a virtual meeting setting, symbolizing the collaborative nature of the DAG. The image should convey the essence of teamwork and digital engagement. By joining the DAG, members will have the chance to make a significant impact on digital health policies and ensure that the voices of those living with rare diseases are heard and acted upon. This initiative by EURORDIS underscores the vital role of patient engagement in shaping the future of digital health.
Resource: Rare Diseases Europe, May 21, 2024
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