Our Commitment to Rare Disease Advocacy
At Pharm-D Health Science, we believe that every individual deserves access to care and support they need – no matter how rare their condition may be. Program JARANG is our commitment to improving lives by addressing the unique challenges faced by patients with rare diseases and their caregivers.
We work closely with patient organizations, healthcare professionals, and policymakers to foster collaboration and drive meaningful change in the rare disease landscape.
What is Program JARANG
Jarang which means “rare” in Malay, symbolizes our missions to shine light on rare diseases that often go unnoticed.
Our slogan, Jarang Tapi Kita Bersama (Rare But We Are Together), captures the essence of unity, hope, and collective support for individuals and families impacted by rare diseases. It underscores the strength of community and the shared responsibility of humanity. Despite the rarity of these conditions, no one should face them alone.
This slogan reflects the collaborative efforts of healthcare professionals, advocates, policymakers, industry leaders, and society in coming together to provide care, solutions, and unwavering support for those affected.
Why Program JARANG Matters
Rare diseases affect 300 millions of people globally, yet the lack of awareness and resources often leaves patients and families feeling isolated.
Rare Disease Landscape in Malaysia
- Shafie AA, Supian A, Ahmad Hassali MA, Ngu L-H, Thong M-K. Ayob H, et al. (2020) Rare disease in Malaysia: Challenges and solutions. PLoS ONE 15(4): e0230850 https://doi.org/10.1371/journal.pone.0230850 pmid:32240232
- The Lancet Global Health. (2024). The landscape for rare diseases in 2024. The Lancet Global Health. https://doi.org/10.1016/S2214-109X(24)00056-1
- Ministry of Health Malaysia (2023). Malaysian Rare Disease List.
Strategic Pillars of Program JARANG
Empowering lives, advocating change.
Advocacy Milestones
Over the past two decades, significant strides have been made to improve the lives of those affected by rare diseases.
2004
Successfully introduced and provided access to the 1st rare disease medicine portfolio under PDHS.
2009
Organized the first-ever Rare Disease Family Day at HKL for Rare Disease patients and family members.
2010
Pioneered the launched of rare disease metabolic products.
2010 to 2023
Hosted 2 Rare Disease Family Days at Genting and Jungle Gym for Rare Disease patients and family members
2024
Ongoing expansion and sourcing of niche rare disease medicines to support patients.
Broadening the portfolio of metabolic and medical nutrition products.
2024
The launch of Program JARANG, the Rare Disease Advocacy Network Programme of Pharm-D Health Science.
Stories of Hope and Resilience
Watch inspiring stories from patients and caregivers as they share their journeys and experiences living with rare diseases.
Events & Highlights
Stay updated on our upcoming programs and catch up on recent events that bring the rare disease community together.
Knowledge Hub
Trusted resources to support patients, caregivers, and healthcare professionals in navigating and understanding genetics and rare diseases.
- Buku Resipi Rendah Protein untuk Pesakit Inherited Metabolic Disorders (IMD)
- Diagnosis and Management of Genetic Disorders in Malaysia: A Practical Guide
- Inborn Errors of Metabolism: A Survival Guide
Buku Resipi Rendah Protein untuk Pesakit Inherited Metabolic Disorders (IMD)
This Low Protein Recipe for Patients with Inherited Metabolic Disorders (IMD) is shared with permission from Hospital Kuala Lumpur, specifically the Department of Dietetics & Food Services and the Department of Genetics.
We sincerely thank the editorial team for their dedication in compiling the 2025 Low Protein Recipe Book: Koh Bi Qi, Lai Jaan Jiar, Lim Jing Ying, Maslina Binti Mohamad, Mohd Fatahudibin Ishak, Nur Sakinah Binti Ibrahim, Rufaida Binti Md. Rani, Tan Sing Ean, and Zaridah Binti Zainuri.
We also acknowledge the support of:
- YBhg Dato’ Dr. Harikrishna K. R. Nair (Director, Hospital Kuala Lumpur)
- Dr. Ngu Lock Hock (Head, Genetics Department)
- Hjh. Basmawati Baharom (Head, Dietetics & Food Services)
This recipe book is part of their collective effort to improve dietary care for IMD patients, and we are honoured to help share their work.
The printing of this book has been made possible with the support and contribution of Pharm-D Health Science.
Diagnosis and Management of Genetic Disorders in Malaysia: A Practical Guide
Diagnosis and Management of Genetic Disorders in Malaysia: A Practical Guide is the first Malaysian authored guide dedicated to diagnosing and managing genetic conditions in the Malaysian context.
Developed by experts from Hospital Kuala Lumpur and MOH, it combines over a decade of clinical experience with the latest advances in genetics and genomics. Covering fundamental principles, common disorders, diagnostic approaches, and supportive care, it offers practical guidance for everyday clinical practice.
Published by the Department of Clinical Genetics of Hospital Kuala Lumpur (HKL), this guide is suitable for clinicians, paediatricians, geneticists, medical trainees, and allied health professionals, as well as educators and policymakers involved in rare disease care.
Publisher: Hospital Kuala Lumpur , Department of Clinical Genetics
Chief Editor: Dr Ngu Lock Hock, Head and Consultant Clinical Geneticist, HKL
Editors:
Inborn Errors of Metabolism: A Survival Guide
Inborn Errors of Metabolism: A Survival Guide is a practical reference created by the Department of Clinical Genetics, Hospital Kuala Lumpur, to simplify one of medicine’s most complex fields. Covering over 1,500 rare disorders, it presents clear “red flags,” diagnostic pathways, and treatment approaches that can make the difference between life-saving intervention and missed diagnosis.
Designed with Malaysian clinical realities in mind, this guide is especially useful for paediatricians, medical officers, residents, and allied healthcare professionals—but equally valuable for physicians and genetic counsellors encountering these lifelong conditions.
Publisher: Hospital Kuala Lumpur , Department of Clinical Genetics
Chief Editor: Dr Ngu Lock Hock, Head and Consultant Clinical Geneticist, HKL
Editors:
Stronger Together for the Rare Disease Community
Explore and connect with rare disease organizations to learn more about their advocacy efforts and support initiatives.
Frequently Asked Questions
Looking for help? Find answers to frequently asked questions here.
What is Program JARANG?
Program JARANG is a dedicated initiative by Pharm-D Health Science group aimed at raising awareness, improving patient support and expending access to resources for rare diseases in Malaysia.
How is this program different from a patient organization?
Unlike a patient organization, Program JARANG is an advocacy initiative led by Pharm-D Health Science, a home-grown pharmaceutical group of companies. While patient organizations are typically grassroots organizations led by patients or caregivers to provide direct support and representations; Program JARANG solely focuses on advocacy and awareness. We strive to work closely with patient organizations and healthcare providers, aiming to complement existing efforts.
Does this program provide direct patient healthcare services or medical advice?
No, Program JARANG does not offer direct patient healthcare services or medical advice. Instead, our focus is on awareness campaigns, educational initiatives and resource sharing for rare diseases. We encourage patients and families to seek medical advice from healthcare professionals and utilize patient organizations for direct support.
How does Program JARANG benefit rare disease patients and their families?
Program JARANG benefits rare disease patients and families by raising public awareness about rare diseases, improving understanding within communities and advocating for accessible healthcare resources.
How does Program JARANG collaborate with healthcare professionals and patient organizations?
We collaborate with healthcare professionals and patient organizations by aligning our initiatives with their needs and priorities. This can include co-hosting awareness events, supporting educational programs, and sharing resources to benefit patients and caregivers.
How You Can Get Involved
Program JARANG thrives on collaboration.
Partner with us and join our events to spread awareness, provide care and support, and build a supportive community. Together, we can transform rare disease care in Malaysia.