MRDS is a support group dedicated to assisting families dealing with rare disorders. It was founded by parents of children who receive care at the University Malaya Medical Centre. Rare disorders are medical conditions that affect a small number of individuals and can be caused by genetic, environmental, or unknown factors. Examples of rare disorders include brittle bone disease (which leads to fragile bones), Duchenne Muscular Dystrophy, and Prader-Willi syndrome.
Their objectives encompass:
– Caring for the well-being of individuals and families affected by rare disorders.
– Providing support and assistance to those affected.
– Disseminating accurate information about rare disorders and raising public awareness.
– Collaborating with relevant agencies involved in treatment, education, and training.
– Partnering with organizations focused on assessing, preventing, and treating rare disorders.
– Fundraising to support their mission.
MRDS engages in various activities, including:
– Publishing books and materials about selected rare disorders.
– Hosting events to educate members on topics such as education and welfare.
– Organizing outings and recreational activities for members.
– Participating in exhibitions and other awareness initiatives.
– Involvement in international symposiums related to rare disorders.
Support for MRDS can be extended through:
– Volunteering: They welcome volunteers for events and activities.
– Purchasing their book, ‘Rare Journeys of Love,’ which is available on their website.
– Following them on Facebook for updates on rare diseases and upcoming events.
– Donating, with the option of receiving receipts for tax deductions. Details on how to donate can be found on their website. MRDS aims to secure enough funds for various purposes, including hiring a permanent administrator, translating and printing medical materials in Bahasa Melayu, increasing funding for the Genetics Tests Assistance Fund, funding research projects by universities, and establishing a long-term foundation.
Malaysian Rare Disorders Society
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