Rare Disease Day 2017: Balik Kampung is organised by Rare Disorders Society (Singapore). At the event, Rainbow Across Borders will present findings from Hearts, Hopes and Aims: A Singapore Rare Disease Impact Study 2016, a comprehensive study to better understand the needs of rare disease patients and their caregivers in Singapore, with the intention to identify areas for community involvement and humanitarian solutions. This study will provide insights into the lives of the patients in Singapore, particularly their challenges and dreams.
With this, we will be able to bring together the many stakeholders in rare disease management to catalyse strategic solutions for the management and care of rare disease patients and their families. We believe that with our concerted effort, we will be that much more effective.
This impact study will feature patient stories highlighting 18 or more rare disease conditions, which have been identified in Singapore. This is in line with the international Rare Disease Day 2017 theme ‘Research’, and slogan “With research, possibilities are limitless”.
Rare disease research is crucial to providing patients with the solutions they need, whether it is a treatment, cure or improved care. The tenth edition of Rare Disease Day will see people from all over the world come together to advocate for more research on rare diseases. Rare Disease Day 2017 is the opportunity to call upon researchers, universities, students, companies, policy makers and clinicians to do more research and to make them aware of the importance of research for the rare disease community.