Malaysia Lysosomal Diseases Association

30/08/2026

Kami amat menghargai keprihatinan YBMK dan pihak KKM yang sentiasa bersinergi dengan kami. Semoga semangat kebangsaan ini memperkukuh lagi tekad kita semua untuk memastikan tiada pesakit penyakit jarang jumpa yang terpinggir di tanah air sendiri.

Selamat Hari Kemerdekaan 2026!!!🇲🇾✨

Teruskan perjuangan, teguh bersama, dan hayati erti merdeka dalam setiap nafas perjuangan kita.

24/08/2026

22/08/2026

Terima kasih ahli -ahli MLDA sudi hadir ke mesyuarat AGM ke 16 MLDA, terutama ahli-ahli yang datang dari jauh seperti Kepala Batas, Tanah Merah. Juga mereka yang meluangkan masa menghadiri AGM atas talian.

Terima kasih atas kehadiran kamu dan kami telah berjaya memilih ahli-ahli jawatankuasa baru untuk 2026-2028.

Bersama-sama kami memperjuangkan masa depan yang lebih baik untuk pesakit-pesakit l*d.

22/08/2026

📢 Reaching for the Stars, Rooted in Reality: Advocating for Rare Diseases at the KEMENTERIAN KESIHATAN MALAYSIA Budget 2027 Dialogue

We recently participated in the Sesi Libat Urus Belanjawan 2027 with the Ministry of Health Malaysia (KKM) in Putrajaya. The theme of the session, "Menggapai di Langit, Mengakar di Bumi," reflects a bold vision for a modern, efficient healthcare system that remains firmly grounded in the real-world experiences of patients.

Here are the key highlights and priorities raised for the Rare Disease community:

· 📈 Outcome-Based Budgeting: The ministry is shifting from traditional "line budgeting" to "outcome-based budgeting". This means the focus is no longer just on the amount spent (such as the recent increase to RM45 million for rare diseases), but on the actual impact and patient experience—ensuring every ringgit provides the best "bang for the buck" for those in need.
· 🚀 The National Action Plan: We are pushing for the urgent finalization of the National Action Plan for Rare Diseases with clear, actionable targets. We need a system that tracks proposals effectively so that advocacy efforts lead to direct implementation.
· 🤝 A Three-Pronged Strategy summarized by Pn Nadiah Hanim President of Malaysian Rare Disorders Society (Persatuan Penyakit Jarang Jumpa Malaysia) :
1. Act Now: Execute the rare disease plan with measurable outcomes.
2. Accelerate: Close the gap between urban and rural areas (including Sabah and Sarawak) by increasing capacity for genetic and diagnostic testing.
3. Integrate: Break down silos between ministries and leverage Malaysia’s ASEAN leadership for shared data and drug procurement to make innovative treatments more accessible.

The Rare Disease community is not just a group of beneficiaries; we are partners in change. We are ready to work alongside KKM to ensure that from "cradle to grave," no patient is left behind.

Together, let’s make a more resilient and equitable healthcare system for all Malaysians. 🇲🇾

20/08/2026

Congratulations to our committee member Sathyan, being the 1st Malaysian who reached the finishing line at the 1500km Bentang Jawa Race! This is one of our Ride With Hope program this year, with the aims to create awareness among the public and also raising fund for the high cost of Enzyme Replacement Therapy and also improving the welfare of L*D patients.

31/07/2026

🎉 MISSION ACCOMPLISHED: WE DID IT! 🎉
​Huge congratulations to our MLDA President, Ir. Lee Yee Seng, for successfully conquering the famous Wuling climb in Taiwan! 🚴‍♂️💨
​It was no easy feat—navigating thin air, endless steep ascents, and multiple stops—but carrying "Hope Baby" along for the ride and knowing he had your support kept him moving all the way to the top! ⛰️❤️
​Best of all? Thanks to YOUR generous donations, we have officially hit our fundraising target! 🎯✨
​Every Ringgit donated brings hope, essential care, and vital support to patients living with Lysosomal Storage Diseases (L*D) across Malaysia.
​To every donor, well-wisher, and supporter who cheered Ir. Lee on: THANK YOU! You made this achievement possible. 🙏💙
​

17/07/2026

Yesterday, MLDA officially handed over a brand-new Defibrillator to Genetic Clinic, Institute Pediatric HKL.
Designed to serve both adult and pediatric patients seamlessly.
At MLDA, we believe that every patient deserves access to the highest standard of sustainable healthcare. We hope this device will be a pillar of support for the incredible medical team there as they save lives daily.
Thank you to everyone who supports MLDA. Together, we make a difference! 🤝❤️

14/07/2026

🚴‍♂️ TWO RIDERS. TWO COUNTRIES. ONE MISSION! 🚴‍♂️
​This August, passion meets purpose as two extraordinary individuals take on grueling terrains to bring hope to our rare disease community.
​MLDA President, Ir. Lee Yee Seng, and our committee member, Sathyan, are gearing up for the ultimate test of endurance—completely self-funded—to raise funds and vital awareness for children and families living with Lysosomal Diseases.
​They are pushing their limits across two different countries so that our patients don't have to fight their battles alone:
​🌏 Sathyan – Bentang Jawa (1,500km)
Taking on a brutal 1,500km ultra-cycling race across the entire island of Java, Indonesia. Countless climbs, long nights, and endless roads lie ahead.
​🌏 Ir. Lee Yee Seng – Wuling, Taiwan
Conquering the legendary, unforgiving mountain climbs of Wuling, Taiwan—known as one of the highest and toughest cycling routes in Asia.
​🧡 How You Can Help Turn Kilometres into Hope:
​This journey is completely self-funded by our riders. Every single RM raised goes directly towards supporting our patient families. Your contributions help provide:
​Patient Support & Family Assistance
​Life-Saving Care & Treatment Assistance
​Awareness & Education for Rare Inherited Metabolic Disorders
​Every donation, every share, and every word of encouragement makes a massive difference.
If you wish to support these good causes, please transfer fund to Pertubuhan Penyakit Lisosomal Malaysia, Public Bank account number 3169692035, please provide us your personal details ie name, ic no,address and email to [email protected].
​Let's rally behind Ir. Lee and Sathyan. We ride so they can hope. 🦥🚴‍♂️
​

11/04/2026

We are beyond grateful to IJM Land Rimbayu for their incredible generosity!

During tonight IJM Half Marathon Run With Me 2026, IJM Land presented a donation of RM10,000 to MLDA.

This contribution goes a long way in supporting our mission to provide better care, advocacy, and life-saving treatments for our patients. Seeing the community come together for health and charity truly warms our hearts.

A huge thank you to the organizers and every runner who participated. Your strides are making a real difference in the lives of those battling rare diseases. 💙❤️

21/03/2026

Wishing our Muslim friends_SELAMAT HARI RAYA AIDILFITRI!

Hereby we are sending the warmest and most joyous wishes to you and your family for a truly blessed & happy Aidilfitri.

May this Syawal be filled with the warmth of family, the laughter of friends, and the triumph of the human spirit.

And ​we hope this festival of forgiveness is filled with delicious food, wonderful reunions, and precious memories.

Maaf Zahir & Batin.

From board members of MLDA