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:
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.
Mei Ching Ong is the Region Head of Asia Pacific, Eastern Europe and Central Asia. Mei Ching is based in our regional office located in Kuala Lumpur, Malaysia. Although growing up in a town facing the South China Sea with beautiful beaches, she is enjoying mountains, jungles and greens more than water, that explains she is spending most of her early morning during weekends in greens. Believing in everyone is connected with each another in this cycle we call life, Mei Ching also believes everyone has roles to play to strengthen the overall well-being of lives of human.
This year, each of us had to learn how to support one another amid a global pandemic. In these difficult times, our mental and physical health have been tested and finding daily comforts is critical to our health. As each of us has taken steps to avoid infecting ourselves and reducing the risk of infecting….
In an ideal world, a diagnosed cancer patient would receive disease and treatment information from their physician and healthcare workers at the clinic. With access to technology, they would broaden their knowledge and gain additional support from a patient group. Family and community members would also play a supportive role in searching for information and support.
I found myself reflecting about vulnerability. In a way, vulnerability is an impact. After hours of phone calls throughout the year, families have opened themselves up to me. The vulnerability is not just a spur of the moment but hopefully built on mutual trust and respect. I gain a new perspective about vulnerability – it draws out your strength when you respond to it with care.
