Juniper
Front – Professor Dr Lim Soo Kun, Dr Rosnawati Yahya, Kshitij Varma & Fashli Aziz
Behind – Dr Nur Syimah Izzah Abdullah Thani, Astrazenca Malaysia Corporate Affairs Director, Dr Izzuna Mudla binti Mohamed Ghazali, Deputy Director of Medical Development Division, Ministry of Health & Mr Choo Kok Ming, CEO National Kidney Foundation of Malaysia
AstraZeneca Malaysia and the Malaysian Society of Nephrology (MSN) yesterday signed a two-year Memorandum of Understanding (MoU) to collaborate on initiatives aimed at improving awareness and understanding of aHUS, a rare disease that can lead to severe kidney damage and other organ complications if not recognised and managed timely.1
Under the MoU, AstraZeneca Malaysia and MSN will explore initiatives to strengthen disease awareness and education among healthcare professionals, support early recognition and timely referral, and encourage multidisciplinary approaches to care. It also aims to support more coordinated care by improving understanding of local patient needs, care pathways and challenges associated with aHUS in Malaysia.
aHUS is a rare form of thrombotic microangiopathy associated with abnormal complement activation that can affect multiple organs, particularly the kidneys.2 In Malaysia, aHUS is listed as a rare haematological disease under the Malaysian Orphan Medicines Guideline.3 Early recognition and diagnosis are important to support appropriate management and reduce the risk of irreversible organ damage, including end stage kidney disease.4
While aHUS is a recognised rare disease, challenges may arise at different points along the patient journey. These may include variability in disease recognition, access to appropriate diagnostic investigations where available, referral to centres with relevant expertise, and familiarity with the condition among healthcare professionals involved in the care of both adult and paediatric patients.5
Commenting on the collaboration, Dr Rosnawati Yahya, President of the Malaysian Society of Nephrology, said “aHUS is a rare and serious condition that requires timely recognition and coordinated care. Through this collaboration, MSN aims to support healthcare professionals with relevant education, encourage appropriate referral, and strengthen understanding of the challenges faced by patients and families in Malaysia.”
Dr Svetlana Yanchuk, Country President of AstraZeneca Malaysia, said ” Rare diseases place a significant burden on patients, their families, and healthcare systems, yet they often receive limited attention because of their low prevalence. Through this collaboration with MSN, we hope to support practical, evidence-based initiatives that improve awareness and understanding of these conditions. Given the risk of severe kidney and other organ complications associated with aHUS, increasing awareness and promoting timely recognition may help ensure that patients are referred to the appropriate specialists, assessed promptly, and receive the care they need.”
Professor Dr Lim Soo Kun, Professor of Medicine and Senior Consultant Nephrologist, said “Rare diseases such as aHUS can present significant diagnostic challenges because patients often experience symptoms that overlap with other conditions. Strengthening awareness among healthcare professionals and creating a clearer referral pathway may help patients reach the right expertise sooner and improve the outcomes.”
Choo Kok Ming, Chief Executive Officer of the National Kidney Foundation of Malaysia, said
“Families affected by rare kidney conditions often need reliable information and support in navigating the healthcare system. Patient organisations play an important role in connecting families with credible resources, peer support and appropriate services throughout their care journey.”
Mr Mohd Nizrul, a caregiver to a patient with aHUS, said “For our family, the journey to receiving clear answers was difficult and uncertain. We hope that greater awareness will help other families find the right information, medical advice and support earlier in their journey.”
The collaboration comes ahead of aHUS Awareness Day on 24 September, providing an opportunity to spotlight the importance of recognising rare diseases earlier and strengthening coordination across the healthcare ecosystem to support patients and families.
By bringing together MSN’s clinical leadership and professional network with AstraZeneca’s scientific expertise and healthcare system experience, the collaboration aims to create a stronger foundation for locally relevant initiatives that support healthcare professionals and patients alike.
Ultimately, meaningful progress will require continued collaboration across the wider healthcare ecosystem, including healthcare professionals, policymakers, medical societies, patient organisation groups and industry partners. Through greater awareness, stronger coordination and shared commitment, such partnership can contribute meaningfully towards improving the experience of people affected by aHUS in Malaysia.
