HEALTH SELECT COMMITTEE REPORT: STRENGTHENING THE RARE DISEASE ECOSYSTEM IN MALAYSIA

This report is the outcome of engagement sessions conducted by the Malaysian Parliament’s Health Select Committee with various stakeholders.

MRDS was among the stakeholders invited to participate in the Second Meeting held on 9 July 2026, where we shared insights on the challenges, opportunities and recommendations for strengthening Malaysia’s rare disease ecosystem.

MRDS would like to express our sincere appreciation to the Malaysian Parliament’s Health Select Committee for the opportunity to contribute our perspectives and recommendations towards strengthening the rare disease ecosystem in Malaysia.

#RareDiseaseAwareness #RareDiseaseAdvocacy

“Attending the 2026 International Workshop on Alport Syndrome, Budapest, Hungary- 5-7 September 2026 and sharing our Malaysia paper on this hereditary kidney condition was deeply moving, especially seeing researchers and clinicians rally around patients like us. Hearing about breakthroughs in targeted therapies gave me so much encouragement. My greatest hope is that science uncovers even more about Alport syndrome so families everywhere can access earlier diagnoses and truly life-changing treatments”, Joyce Teng, PLWRD #rarediseaseadvocate with #alportsyndrome

Congratulations Dr Tan Hai Liang, consultant paediatric nephrologist (children’s kidney specialist) at Tunku Azizah Hospital and team of geneticists #hkl and Joyce Teng who represented the Alport community.

Inna lillahi wa inna ilaihi raji’un. Perkhabaran sedih atas pemergian Allahyarhamah Tun Dr Siti Hasmah Mohamad Ali pada hari ini, 28 September 2026, jam 9.20 pagi.

Sepanjang hayat beliau, antara kenangan bersama MRDS adalah apabila Allahyarhamah bersama Tun Dr Mahathir Mohamad pernah meluangkan masa melawat booth pameran MRDS bersempena World Rare Disease Day pada Februari 2018 di sebuah hospital swasta di Kuala Lumpur. Pada ketika itu, Presiden MRDS, Dato’ Hatijah Ayob, berpeluang menyampaikan buku Rare Journey of Love.

Pada tahun yang sama, satu lagi kenangan bermakna apabila Allahyarhamah menyerahkan cek sumbangan kepada MRDS dan beberapa persatuan lain dalam satu majlis pada Disember 2018.

Kali terakhir, Presiden MRDS, Puan Nadiah Hanim, berkesempatan bergambar bersama Allahyarhamah dalam satu majlis sempena Sambutan Hari Wanita yang diadakan pada awal bulan ini.

MRDS merakamkan ucapan takziah kepada Tun Dr Mahathir Mohamad dan seluruh keluarga atas pemergian ini.

Semoga Allah SWT merahmati roh Allahyarhamah Tun Dr Siti Hasmah Mohamad Ali, menerima segala amal kebajikan dan jasa beliau, serta menempatkan Allahyarhamah dalam kalangan hamba-Nya yang beriman.

Al-Fatihah.

Throughout August, Team MRDS took part in several Budget 2027 Engagement Sessions, ensuring that the voices and needs of Malaysia’s rare disease community continue to be heard and considered.

📍 14 August 2026
Budget 2027 Engagement Session with the Ministry of Women, Family and Community Development (KPWKM)

📍 18 August 2026
Budget 2027 Engagement Session with the Ministry of Finance Malaysia (MOF)

📍 21 August 2026
Budget 2027 Engagement Session with the Ministry of Health Malaysia (MOH)

Our participation is part of MRDS’ ongoing effort to ensure that the rare disease community remains represented and included in national planning and priorities.

#RareDiseasesMalaysia #RareDiseaseAdvocacy #PatientAdvocacy #Budget2027 #Belanjawan2027 #LeaveNoOneBehind #HealthEquity #RareDiseaseCommunity

✨ A meaningful August with MRDS!

Throughout August, MRDS continued to amplify the voices of Malaysia’s rare disease community and bring them to wider spaces. 💙

📍 6 August | Bangkok
The MRDS President attended the IPSF Universal Health Coverage Youth Summit 2026 in her capacity as an RDI Board Director, alongside students and pharmaceutical industry partners from various countries.

📍 15–16 August | Makassar
The MRDS President shared her experience and perspectives through “The Power of Advocacy”, while also learning more about the TUMPAS Epilepsy Indonesia initiative.

📍 15–16 August | Kuala Lumpur
Miza Marsya and Puan Fauzana represented MRDS at a two-day women’s development programme, with MRDS also participating as one of the NGO Partners.

💻 22 August | Online
In conjunction with Malaysia’s 69th National Day, MRDS introduced the #JiwaMerdeka webinar series with its first session, “Rare. Real & Here.” — highlighting the voices, stories and aspirations of youth and supporters of the rare disease community.

📸 23 August | Shah Alam
The #RareButReal Potret journey continues with our second photoshoot, featuring new families and individuals from Malaysia’s rare disease community — including some living with exceptionally rare conditions.

More faces. More stories. More rare realities to be seen and heard.

Stay tuned for the second #RareButReal Exhibition!

Thank you to everyone who continues to walk this journey with us — families, communities, volunteers, NGO partners and supporters.

Every voice, every story and every step brings us closer to a world that is more understanding, inclusive and compassionate. 💙

Rare. Real. Here. And we keep moving forward.

#MRDS #RareDiseasesMalaysia #RareButReal #JiwaMerdeka #RareRealAndHere #PatientAdvocacy #RareDiseaseAwareness

This year, MRDS is once again pleased to collaborate with Fondation IPSEN to translate one of the children’s books from the Children of Genetics collection, titled “Marie, The Little Mouse”, into Bahasa Melayu. 🐭💛

This translation was made possible with the time, effort, and support of two MRDS volunteers, who contributed to MRDS’ ongoing efforts to make educational materials for children more accessible to the community.

🔗 Access the book via the link in the comments.

Our sincere thanks to Fondation IPSEN and our dedicated volunteers for making this new translated edition possible.

#RareDiseaseMalaysia #ChildrenOfGenetics #RareDiseaseAwareness #Genetics

“When will you get better?”

For some people living with a rare disease, the answer is not as simple as it may seem.

For individuals living with Spinocerebellar Ataxia (SCA), every journey is different. Although SCA is a progressive condition, they still want to live their lives as fully as possible, with the hope of being understood, supported and accepted by society.

In this feature by The SunDaily, Ms Normah Osman and Mr Fairuz Abdul Wahab, members of MRDS and members of the SCA Malaysia support group, share their experiences and the realities of living with SCA.

Thank you to The SunDaily for giving a platform to the voices of adults living with rare diseases in Malaysia.

📖 Read the full-page feature, including MRDS’ perspectives on current rare disease issues in Malaysia, via the link in the comments.

#RareDiseaseMalaysia #SCAMalaysia #SpinocerebellarAtaxia #RareDiseaseAwareness #AdultRD

Haze alert! 😷 Dropping air quality means it’s time to take extra care—especially for our Rare Disease (RD) community members with respiratory or immune sensitivities.

Let's keep outdoor activities to a minimum, stay safe indoors, and keep a close eye on updates! 💛
With care from the MRDS Committee

Jerebu sedang melanda! 😷 Kualiti udara yang merosot ini memerlukan kita lebih berwaspada, terutamanya buat komuniti Penyakit Jarang Jumpa (RD) yang ada komplikasi pernafasan atau sistem imun rendah.

Jom kita sama-sama kurangkan aktiviti luar dan sentiasa peka dengan nasihat kesihatan yang dikeluarkan dari masa ke semasa.

In celebration of #Merdeka69, Prof. Dr. Thong Meow Keong and Dr. Kavitha share a special #JiwaMerdeka message with the RD Malaysia community. 🇲🇾❤️

May the spirit of independence continue to unite, strengthen, and inspire us all.

#Merdeka69 #JiwaMerdeka #RareRealHere

6 Ogos 2026 - Bersempena 71st IPSF World Congress 2026, Puan Nadiah Hanim, dalam kapasiti beliau sebagai Ahli Lembaga Rare Diseases International (RDI), telah menyertai sesi panel IPSF Universal Health Coverage Youth Summit 2026 di Bangkok.

Perbincangan panel memberi fokus kepada perjalanan penyakit jarang jumpa daripada inovasi dan breakthrough hingga ke bedside, termasuk cabaran “silo” dalam sistem yang perlu diatasi bagi memastikan penyelidikan, dasar, rawatan dan akses pesakit dapat bergerak secara lebih terselaras.

Pengalaman Thailand dan beberapa negara serantau turut dikongsikan, termasuk bagaimana konsep Universal Health Coverage (UHC) perlu benar-benar mengambil kira golongan yang paling rentan dan terpinggir dalam sistem kesihatan.

Puan Nadiah turut berpeluang berinteraksi dengan Timbalan Perdana Menteri Thailand yang juga merangkap Minister of Higher Education, Science, Research and Innovation (MHESI), wakil institusi kesihatan, Ahli Parlimen, universiti serta organisasi antarabangsa termasuk FIP, IPSF, CSEM for UHC2030 dan APCASO.

Penglibatan ini penting dalam memastikan suara komuniti penyakit jarang jumpa terus dibawa ke ruang perbincangan dasar, akses rawatan dan kesaksamaan kesihatan.