Formed in 2015, Rainbow Across Borders (RAB) aims to improve the quality of life of, and give dignity to, patients and families challenged by chronic or life-threatening illnesses.
RAB is Asia’s first regional patient support group alliance which promotes regional collaboration and networking among patient support organisations with the aim to empower the organisations through appropriate programmes, services and training, while facilitating learning and experience exchange among more than 100 patient groups in the region.
Based in Singapore, RAB works with patient organisations, pharmaceuticals, patients, caregivers, physicians and health officials from Malaysia, Indonesia, Thailand, Philippines, Vietnam, Hong Kong & India in the areas of Rare Disease, Diabetes, Cardiovascular Health, Haemophilia, Blood Disorders and Lung Health.
Advocacy is what RAB builds with the many stakeholders involved in patient care. In Asia, the concept of advocacy is still “new” or in its infancy. We are working on new programmes to build on the patient involvement in the various healthcare systems. A system that is built based on understanding the patients’ needs will have more effective programmes with better outcomes. This not only benefits the patients but also the many caregivers who are the silent voices behind each patient.
“We bring together the people who are directly involved in patient care and management to understand the burden of the disease and to improve their quality of life of each patient and caregiver. This is accomplished by bringing the various stakeholders to come together and build/create patient centric programmes for both access and awareness. The patient voice is what we lack in this region, which translates to the patient data. We have not been able to make an effective evidenced-based appeal to our policy makers due to the lack of credible data." said Rajakanth, Executive Director of Rainbow Across Borders.
RAB has a Lung Health Summit in the pipeline, focusing on Asthma, Chronic Obstructive Pulmonary Disease and Idiopathic Pulmonary Fibrosis in July 2017 and another patient centric platform for Diabetes in November 2017 in the Philippines which will look at patient-driven programmes in preventing Diabetes.
From Rare Diseases to Lung Health and Diabetes, the focus for RAB and many of its working partners now is to understand the impact of the disease through various studies with the many patient groups in the region. These impact studies are conducted with the physicians, patients and caregivers. They study covers issues on access to treatment, information on diseases, psychosocial support for patients and caregivers, disability, prevention before cure, education and coping with the illness.
We look forward to having more partners who will be able to join us in this journey in building the Voice of Advocacy for Chronic Diseases in Asia. We are trying to build a One Voice approach for this region in patient care. This will help us to establish a collective approach for care and management. It also serves as a platform for us to learn and adopt best practices from our neighbours around us. Everyone has a hand in improving patient care. All of us are not excluded from being a patient at some point of our life.
More information on Rainbow Across Borders can be accessed at www.rabasia.org or you can get in contact with Raj directly at firstname.lastname@example.org.
About the Author
Rainbow Across Borders (Singapore)
Raj has been involved in non-profit healthcare management for more than 18 years, focusing on illness specific programmes for patients and their caregivers.
He has spearheaded a number of regional efforts in building awareness and creating advocacy, empowerment and access programmes with patient support organisations. While he holds a special interest in Rare Diseases, he has also been engaged in the areas of Lung Health, Blood Disorders, Cardiovascular Health and Diabetes.
Raj strongly believes in the power of the patient voice and has been actively encouraging a patient centric community by creating opportunities for groups to connect and collaborate, both locally and regionally. To achieve this, he works closely with patient support organisations in Singapore, Malaysia, Thailand, Indonesia, The Philippines, Vietnam and Hong Kong.
Currently, Raj is working on a regional project to collate and analyse evidence of the impact of rare disease on patients and caregivers. With this, he hopes to bring about an improvement in the quality of life of patients and their caregivers.