In conjunction with Rare Disease Day 2010, the Malaysian Rare Disorders Society (MRDS) organized several events aimed at increasing awareness on patients with rare disorders and the struggles that they go through. It was the first time the occasion was observed in Malaysia.

An exhibition was organized at a major hospital in the nation’s capital, Kuala Lumpur. It spanned four days and provided information on the organisation as well as details on Rare Disease Day and its significance. Reading materials on various types of rare diseases and also general information on what are rare diseases were available. Posters on what the organisation is about and the activities they do were put up for viewing. It attracted a significant number of visitors, most of whom had either never heard of the term before or knew someone who exhibited certain symptoms but have not been given a diagnosis.

 In addition to that, a press conference was held to create awareness among the public on the existence of these disorders in the society and to hopefully stir them to play a part in providing support in one way or another to patients and families of interest. It is also hoped that the government’s attention and commitment towards this cause would be increased as public awareness elevates. Speakers at the press conference included the MRDS President, Dato’ Hatijah Ayob and the consultant paediatrician cum head of University of Malaya Medical Centre genetics unit, Prof M. K. Thong.

At the press conference, the MRDS president spoke of one of the major struggles that patients with rare diseases face, the lack of accessibility to drugs and when they are available, the high cost involved in obtaining them. This, she said has led the society to declare as one of its immediate aims, the setting up of a foundation that will be able to help fund medications, testing and research. To initiate the starting of the foundation, the organisation has agreed to enlist a team of four amateur cyclists with really big hearts, who offered to cycle the length of peninsula Malaysia and raise funds through corporate and personal appeals, as well as creating awareness on rare diseases at the same time. The project, called Jelajah Jarang Jumpa (Rare Tour) Cyclethon – Journey of Hope, will span a period of 13 days covering more than a thousand kilometres, and proceeds will entirely be channelled to the foundation.

In addition to that, issues such as the lack of medical professionals specialising in rare disorders such as clinical geneticists and genetic counsellors as well as the absence of a comprehensive registry on rare disease patients were also highlighted at the press conference.

The press conference was aired by a radio station, televised by two national television stations during their primetime news and was also reported in two major newspapers. The exposure given by the media for this event is certainly a good starting point towards promoting this cause and has helped to set the groundwork for more intense efforts to be undertaken in the future.

The final event held to mark Rare Disease Day was a gathering at the President’s home for people with rare diseases and their family members. It provided an avenue for members to meet and share their stories with each other as well as for MRDS to reach out to new members and explain to them the role of the society. The evening also turned out to be fun for the children as they were kept busy with sand art and balloons.    

The MRDS is very glad to have been able to celebrate Rare Disease Day for the very first time in Malaysia. Although on a relatively small scale, we are proud to have the ball rolling and will continue to spare no effort in supporting the needs of people with rare diseases in this country. It is our great hope that these efforts would push the government into giving a higher degree of commitment towards supporting the medical needs and welfare of rare disease patients and their families.

Malaysian Rare Disorders Society (MRDS)

MRDS is a voluntary organisation set-up to represent and look out for the welfare of individuals including their families that are affected by rare disorders.

We are about parent support. We hold events where parents share about their experiences in raising their children with rare disorders.

We are about raising community awareness. We join community events to raise awareness about rare disorders.

We are about involving our children in healthy activities. We look for opportunities for our children to participate in such outings and art activities.

We are about educating ourselves. We want to know what the latest medical research is done on specific rare disorders.

For more information on MRDS, visit us at www.mrds.org.my