Description
The 13th Rare Disease Day Thailand Event will be held on Sunday, February 26th, 2023 under the theme, “Show Your Strips & Share Your Colours”. The purposes of the event are to raise public awareness, showcase the work of the foundation to support those living with rare diseases, build a network between the foundation and patients, express gratitude to the state parties for their policies regarding the treatment of rare diseases and also to explore potential avenues for future treatment.
The Rare Disease Day Thailand Event will be organized through the collaboration between The Rare Disease Foundation Thailand (ThaiRDF), communities of rare disease families, specialists in the field of rare diseases, The Rare Disease Medical Centers, The National Health Security Office (NHSO), and The Ministry of Public Health.
This year’s event will take place on-site after the COVID-19 epidemic situation has subsided, with an opening address given by the President of the Clinical Genetic Network, The Genetics Society of Thailand and the President of the ThaiRDF, who will provide an overview of the foundation’s activities and achievements from the previous year. The event will provide a platform for patients to advocate for more comprehensive care for those living with rare diseases and highlight the inspiring story of the mother with a child diagnosed with Prader-Willi syndrome, who has become a driving force for the Thai RDF.
The main aim of the Rare Disease Day Thailand Event is to foster the creation of networks for patients living with rare diseases, therefore, a diverse group of such patients has been invited, including pioneers, newly established groups, and previously un-united groups. They will have the opportunity to exchange information, share experiences, and discuss the work, challenges, and concerns associated with their conditions. This will provide a platform for these patients to connect and communicate with one another.
Other important agendas to be addressed during the event include discussions on the concerns and possible recommendations regarding public policies and access to treatment for patients with rare diseases.
If you are interested in joining the event, please find more information on Facebook ThaiRDF and Rare Disease Day Thailand, or call 0802940794, or line @383dgmsz, Rare Disease Day official line
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