ABOUT US
WHO WE ARE?
We are about RARE disorders. A rare disorder (RD) is a medical condition that affects only a few people in the population and usually has genetic origins. Malaysia defines a rare disease as one which has prevalence of 1 in 4000 births. Examples include Osteogenesis Imperfecta (brittle bones disease), Duchenne Muscular Dystrophy, Cri Du Chat, Cornelia de Lange Syndrome and Treacher Collins Syndrome.
We are about establisment of RD and Orphan Drug Policies/Acts. We are working with various stakeholders to deliver long term value for the RD Community by championing full recognition of rights.
We are about maintaining a strong RD network in Malaysia. We align, collaborate and unite with other rare diseases organizations & groups and various stakeholders in Malaysia to achieve equitable access to medicines, health services, education and employment for the RD community.
We are about raising community awareness. We work with various electronic & print media to educate the public about rare diseases, use our social media platforms (e.g., Facebook, Instagram, YouTube) to highlight patient stories and organization initiatives, hold annual events to celebrate World Rare Disorder Day (WRDD), held regional & international conferences whilst networking with various stakeholders and we have published our first book, “Rare Journey of Love”.
We are about RD individuals and families support. We welcome new members via quarterly onboarding, we link families of the same RD type via chat groups to make daily caring easier, we link families with health professionals and health services as needed, we inform families of available financial assistance and we hold annual family outings with healthy activities.
We are about RD Youth empowerment. We conduct programs to empower RD youth, we work with RD youth on various empowerment platforms i.e., WAUlahh, Rare Catalogue and Art by the Rare Team (ART), we support RD Youth endeavors and businesses and we continuously look for opportunities for them to lead independent lives.
