Who are we

MRDS is a support group for families with rare disorders. It was started by parents of children who are patients of University Malaya Medical Centre. A rare disorder is a medical disorder that affects a small number of people and is caused by genetic, environmental or unknown factors. Some examples of rare disorders are brittle bones disease (bones that break easily), Duchenne Muscular Dystrophy and Prader-Willi syndrome.

Our objectives

1. To look after the welfare of individuals and families affected by rare disorders.
2. To support and assist individuals and families affected by rare disorders
3. To channel accurate information on rare disorders and to raise public awareness of rare disorders.
4. To promote networking with agencies that are involved in treatment, education and  training.
5. To work together with organisations that can help assess, prevent and treat rare disorders.
6. To raise funds.

Our activities

1. Publication and printing of book/materials on selected rare disorders.
2. Organising events to educate members on matters like education, welfare etc.
3. Organising outings and other recreational activities for members.
4. Participation in exhibitions and other public awareness activities.
5. Participation in international symposiums on rare disorders.

How you can support us –

• Sign up as a volunteer. Most of our activities are events based. We need volunteers to help us man our booth in the events that we organize or participate in eg exhibitions, members’ outings and children’s activities. E-mail to us if you are interested.
• Buy our book, ‘Rare Journeys of Love’. Details on how you can get the book can be found in our website here, or you can give us a call.
• Like us on Facebook. Our Facebook have the latest news on rare disease and provide details of upcoming events. Click on the Facebook icon found in our website to find us.
• Donate –  we can issue receipts that can be used for tax deduction. Click on to our website to get details on how to donate. We hope for enough funds to:

1. Hire a permanent administrator (can’t grow on volunteer power alone).

2. Finance our next projects :

• translation and printing of medical leaflets on rare disease to Bahasa Melayu
• translation and printing of our book to Bahasa Melayu
• increase funding for our Genetics Tests Assistance Fund
• fund research projects by universities
• set up office

3. For the long term – to set up a foundation

Malaysian Rare Disorders Society