Various parties help to raise public awareness about Rare Diseases. Boleh Space also played a role in organizing the 'Rarely Seen' Talk Program in conjunction with the World Rare Disease Day 2022. This program have taken place on 26 February 2022, 2 - 4 pm online. The invited panel members were:
1) Prof. Dr. Thong Meow Keong Professor of Pediatrics & Clinical Genetics Consultant, University of Malaya Medical Center and also a Trustee of the Rare Diseases Alliance Foundation Malaysia (RDAFM),
2) Ms. Siti Safura Jaafar
Medical and Research Exco & Co -Founder, Spinal Muscular Atrophy (SMA) Malaysia, and,
3) Mr. Azfar Firdaus
Albinism Activist & Freelance Model.
Together we gain knowledge about Rare Diseases in Malaysia. To watch the recording, please click this link: https://www.youtube.com/watch?v=iYy6KjLj-50