Malaysian Rare Disorders Society (Persatuan Penyakit Jarang Jumpa Malaysia)

13/08/2026

30/07/2026

📖 Who is research really for?

At the heart of every clinical study is one fundamental purpose: improving patients' lives.

We're proud to share this insightful article, co-authored by our President, which explores why patients should be more than just participants in research, they should be partners in shaping it. By bringing together scientific expertise with patients' lived experiences, we can make clinical research more relevant, meaningful, and impactful.

As the clinical research landscape continues to evolve, patient-centred research is essential to improving healthcare outcomes and building greater public trust.

📖 Read the full article via the link in the comments.

22/07/2026

21 Julai 2026 - MRDS berbesar hati menyertai sesi libat urus anjuran Cawangan Kawalan Penyakit Tidak Berjangkit (NCD), Jabatan Kesihatan Negeri Perak, sebagai sokongan terhadap usaha memperkukuh pencegahan penyakit tidak berjangkit.

Sesi ini menghimpunkan wakil Pejabat Kesihatan Daerah (PKD) seluruh Perak dan NGO bagi berkongsi inisiatif, mengeratkan kerjasama, serta memperkukuh jaringan ke arah komuniti yang lebih sihat dan inklusif.

Terima kasih kepada Jabatan Kesihatan Negeri Perak atas jemputan ini. Bersama, kita terus memperjuangkan kesihatan untuk semua, termasuk komuniti penyakit jarang jumpa. 💚

22/07/2026

15 - 17 July 2026 - MRDS was honoured to be part of SSV Health Week 2026, organised by Sunway Student Volunteers, as we continue our efforts to raise awareness of rare diseases. Over the three-day event, our speakers—Natasha Md Sharif (IIH Support Group), Ng Quan Wei (Angelman Malaysia), and Puan Nadiah Hanim Abdul Latif, President of MRDS—shared their knowledge, lived experiences, and the importance of recognising and supporting the rare disease community.

In addition to the talks, MRDS also hosted an awareness booth alongside our friends from Spinal Muscular Atrophy Malaysia, engaging with visitors and sharing information about rare diseases. Every conversation is an opportunity to build greater understanding and make rare diseases more visible.

A heartfelt thank you to Sunway Student Volunteers , our speakers, volunteers, members, partners, and everyone who visited our booth. Together, we can continue to raise awareness, inspire advocacy, and ensure that no one living with a rare disease is left behind. 💚

22/07/2026

16 July 2026 - Team MRDS participated in the Sustainability & CSR Malaysia Awards and Carnival 2026 for the first time. At this event, Team MRDS met and greeted guests who visited the MRDS exhibition booth. Thank you to .malaysia for inviting Team MRDS.

15/07/2026

10/07/2026

9 Julai 2026 - Team MRDS diwakili Presiden, Puan Nadiah Hanim bersama-sama Presiden Malaysian Society Of Nephrology, Prof Dr. Lim Soo Kun telah menghadiri Mesyuarat Jawatankuasa Pilihan Kesihatan di Parlimen Malaysia.

10/07/2026

09/07/2026

MRDS was honoured to participate in the Rare Diseases International (RDI) Membership Meeting held in Nairobi, Kenya from 30 June - 2 July 2026 - a pivotal gathering that brought together rare disease advocates from across the world to share knowledge, strengthen networks, reflect, and co-create the future of global rare disease advocacy.

Nadiah Hanim Abdul Latif and Miza Marsya Roslan from MRDS team, together with Caitlin Howley, facilitated a workshop titled "Shaping Your Identity as a Rare Disease Advocate" for the youths under the Youth Leadership Programme (YLP).

Nadiah was also a panelist for "Achieving Your Advocacy Goals", where she shared updates on the work being done in Malaysia for the rare disease community and how we can work together in harmony in both local and global RD ecosystem.

Special thanks for the RDI and Disorders Kenya (RDK) as country host for this year's Membership Meeting and incredible hospitality throughout our stay in Nairobi, Kenya.