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September 14, 2012

Rare Disease Day 2010

Three events were carried out in conjunction with Rare Disease Day 2010 in Malaysia.

1. RARE DISEASE DAY EXHIBITION

An exhibition was organized at Pusat Perubatan Universiti Malaya, Kuala Lumpur. It spanned a period of 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.

2. PRESS CONFERENCE

The 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.

Among the issues that were highlighted during the press conference are:

• Lack of accessibility to drugs and when they are available, the high cost involved in obtaining them

• The setting up of a foundation to help fund medications, testing and research

• The lack of medical professionals specialising in rare diseases such as clinical geneticists and genetic counsellors

• The absence of a comprehensive registry on rare disease patients

Also announced at the press conference was the Jelajah Jarang Jumpa (JJJ) Cyclethon – Jelajah Harapan event to be held in September 2010. This event is organised to raise funds for the foundation. MRDS 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, and at the same time to create awareness on rare diseases. The proceeds raised from the JJJ Cyclethon challenge, which will span a period of 13 days covering more than a thousand kilometres, will entirely be channelled to the foundation.

The press conference was aired by the Bernama radio station, televised by TV3 and TV9 during their primetime news and was also reported in The Star and Metro 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.

3. RARE DISEASE DAY GATHERING

A social gathering for people with rare diseases and their family members was held on 28th February at the residence of MRDS President, Dato’ Hatijah Ayob. 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.

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