Malaysian Rare Disorders Society (MRDS) is a voluntary organization that represents the voice of patients and families affected by rare disorders.
6 Julai 2013 – PPJJM bersama dengan Jabatan Kebajikan Perubatan PPUM (JKP) telah menganjurkan satu lawatan sambil belajar bersama keluarga ke Petrosains KLCC. Seramai 50 orang yang terdiri daripada keluarga-keluarga PPJJM dan ahli keluarga staf JKP telah mengikuti lawatan ini. Keluarga-keluarga PPJJM dan JKP telah dibawa untuk melawat dan berinteraksi dengan pelbagai pameran, permainan dan […]
SHAH ALAM: Students of International Education College (Intec), UiTM Shah Alam, organized a charity run recently. It was the first time the students organized a charity run as part of their co-curricular activities. “The students have to organize projects that benefit the community as part of their co-curricular activities. It is an opportunity for them […]
On 18th April 2009, Kiwanis USJ invited MRDS to participate in Kiwanis Malaysia’s Annual Children’s Party held in Sunway Lagoon. The event was sponsored by Sunway Lagoon Theme Park and the Sunway Resort Hotel & Spa. Due to the limited places, 5 families from MRDS were invited to participate. Among which, 9 children with rare […]
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 […]
Persatuan Penyakit Jarang Jumpa Malaysia (PPJJM) bersama dengan Persatuan Genetik Perubatan Malaysia (PGPM) telah menganjurkan Persidangan Penyakit Jarang Jarang Jumpa Kali Pertama dan Persidangan Perubatan Genetik 2011 yang berlangsung pada 9-10 Jun 2011 di Petaling Jaya. Persidangan ini unik kerana untuk kali pertama di Malaysia ia membawa keluarga-keluarga yang terjejas dengan penyakit jarang jumpa, para […]
The Malaysian Rare Disorders Society (MRDS) together with the Kiwanis Club of USJ (Kiwanis) organized a visit to Zoo Negara on 26th June 2010. Eight families participated in the visit. It was a special day for the MRDS families as it was a rare opportunity for them to go out on a family outing. The […]
Our President, Dato Hatijah Ayob represented MRDS at the 2nd Educational Forum For Families and Caregivers on Mucopolysaccharidoses (MPS) on 11-13 Oct 2009. This event was organised by Taiwan MPS Society. For more information on MPS Taiwan, you can visit their website www.mpssociety.org.tw
MRDS has been fortunate to be chosen as 1 of the 20 charitable organisations in Malaysia For more information on KL Rat Race, please visit www.klratrace.com.my
Mesyuarat Agung Tahun Ketiga PPJJM telah diadakan pada 21 Jun 2009 dimana pemilihan ahli jawatankuasa untuk tahun 2009-2011 telah dijalankan. Dato’ Hatijah Ayob dikekalkan sebagai presiden PPJJM bagi penggal yang baru. Encik Abdul Halim Ismail, seorang ahli PPJJM berkongsi pengalamannya membesarkan seorang anak yang mempunyai Duchenne Muscular Dystrophy (DMD). DMD adalah sejenis penyakit otot dimana […]
PPJJM telah dilancarkan secara rasminya pada 20 Disember 2008. Bertempat di Perpustakaan Komuniti MBPJ di Petaling Jaya, majlis pelancaran PPJJM telah dilancarkan oleh Tan Sri Datuk Paduka Seri Hajjah Zaleha Ismail, pengerusi Majlis Kebajikan Kanak-kanak Malaysia. Professor Dr Thong Meow Keong, pakar perunding kanak-kanak dan genetik dan juga penasihat kepada PPJJM telah memberi penerangan ringkas […]