More than 45 patient advocates came together for the 2015 Rising Sun meeting in Bangkok, Thailand on October 9-11. Rising Sun, the Asia Pacific regional event, is an initiative driven by The Max Foundation in partnership with local patient groups that aims to enhance the capacity of patient-advocate leaders, increase the well-being of patient communities, and raise disease awareness through learning and sharing opportunities.
Starting this year, we expanded the conference to include chronic lymphocytic leukemia (CLL) along with our focus on chronic myeloid leukemia (CML). Most of the patient groups in Rising Sun network serve as the only blood cancer support groups in their local country. The addition of CLL education through Rising Sun will allow patient advocates to support this specific sub-group throughout Asia Pacific.
Hematologists from different countries educated us on different topics such as international perspectives, regional best practices, local management, and drug approval and monitoring.
There was rich discussion in each session as patient advocates raised questions and concerns about accomplishing their goals. Our patient-centered speakers were excellent in providing a clinical view grounded in the patient’s reality. Patient advocates spoke from the patient community perspective, and everyone shaped the discussion towards ways to work together across all stakeholders – from physicians to patients to industries and policy makers.
Rising Sun is not only about disease education. Our second day focused on fundraising strategies and tactics for patient groups. Participants gained skills in online fundraising and social crowd-funding with plenty of time devoted to productive brainstorming.
This year’s meeting was the best one yet based on a few highlights:
- The quality of discussion raised;
- The maturity of patient advocates;
- The move from self-centered towards community-centered;
- The dedication and efforts of our speakers; and
- The participation of participants – from interpersonal discussions to group involvement.
Rising Sun is more than just a meeting, it holds us tight as a region. Beyond a learning and sharing platform, it is also a touching reunion for patient advocates that see each other as family.