Rare Disease Day in Thailand
Patient organisations in Thailand first became involved in Rare Disease Day in 2011. Since then, they've used the occasion to host an annual public gathering in Bangkok city center, which attracts over 300 people annually. In 2016, there was a display of artwork of 2 patients, an 8 year-old boy who has Mucopolysaccharidodsis, and a 13-yr-old girl who has spinal muscular atrophy. On the stage, patients who have problems in access to treatment and the patients who have had succesful treatment shared their experiences and how their life has changed after receving treatment. Rare disease specialists, policy makers, and representatives from patient support group discussed how to better care for patients living with a rare disease in Thailand.
You can also get involved! Do you know of any events not listed here? Email us at [email protected].
Associations participating in Rare Disease Day 2016 from Thailand included the Faculty of Medicine Ramathibodi Hospital, Mahidol University, [email protected]. Please do get in contact if you have any questions.