"Because It's Rare, We Care" is a dedicated initiative by Suriana Welfare Society to support children and families affected by rare diseases. These conditions are often difficult to diagnose, costly to manage, and emotionally overwhelming for families. Through this campaign, Suriana aims to strengthen early detection, improve access to care, and provide holistic support to those affected.
Key Areas of Engagement
Advocacy for Early Rare Disease Detection
Early diagnosis is critical in improving outcomes for children with rare diseases.
• Promote extended newborn screening programs to detect rare conditions at birth
• Advocate for gene sequencing access for older children with undiagnosed conditions
• Raise public awareness on the importance of early detection and intervention
• Collaborate with healthcare providers and policymakers to expand screening accessibility
Impact: Earlier detection reduces long-term complications, improves quality of life, and can be life-saving.
Funds for Diagnostic Testing
Access to early and accurate testing is often limited by cost, leaving many children undiagnosed.
• Raise funds to support extended newborn screening for infants
• Provide financial assistance for gene sequencing tests for older children
• Enable families to access timely and accurate diagnoses regardless of financial background
• Reduce delays in identifying rare diseases through accessible testing
Impact: Increases the number of children diagnosed early, enabling faster intervention and better health outcomes.
Financial Support for Families
Families caring for children with rare diseases often face significant financial strain.
• Provide assistance for medical treatments, medication, and hospital visits
• Support diagnostic testing costs, including genetic testing
• Offer aid for daily living expenses, therapy and specialised care needs
• Help reduce the long-term financial burden on vulnerable households
Impact: Ensures children receive consistent care while easing financial stress on families.
Support for Genetic Counselling Services
Understanding a diagnosis is just as important as receiving one.
• Provide access to professional genetic counselling services
• Help families understand diagnosis, inheritance patterns and future risks
• Offer emotional and psychological support during decision-making processes
• Equip families with knowledge to make informed healthcare choices
Impact: Empowers families with clarity, guidance and confidence in managing rare conditions.
Life-long Care for Rare Disease Patients
Living with a rare disease means a lasting need for medical support
• Specialist Medical Care for ongoing multidisciplinary treatment and regular health monitoring
• Treatment & Therapies with access to medications, 'orphan' drugs, rehabilitation and emerging treatments
• Genetic & Family Support through counselling, education and caregiver support.
• Financial Assistance for treatment, medical equipment and long-term healthcare costs.
• Long-term Wellbeing through community inclusion, independent living and continuous quality-of-life support.
Impact: Together, this ongoing support helps patients manage their condition, maintain their health, and live with dignity, independence, and a better quality of life throughout their lives.
Through these five pillars, Suriana aims to create a more supportive ecosystem for children living with rare diseases; one that prioritizes early detection, accessible care and compassionate support for every family affected.
Suriana Welfare Society is currently working alongside the following pioneers in Rare Diseases:
Dato' Hatijah Ayob
Founder and former President of the Malaysian Rare Disease Society
Dr. Tae Sok Kun
Paediatric, Genetic Sequencing and Pre-emptive Treatment of rare diseases
Professor Thong Meow Kong
Paediatric, Genetic Sequencing and Pre-emptive Treatment of rare diseases
Progress Snapshot since February 2026 to present
The Road Less Travelled
25 September 2025, GNA01 (G Protein Subunit Alpha O1)
Dhia Amanda, our Motivator
8 months ago, a 6-year-old girl named Dhia Amanda was brought to our attention via Free Malaysia Today. This little girl was diagnosed with a severely rare genetic disease known as "GNA01", a disorder that triggers false electrical impulses in the brain that led to issues with her movement, speech and communication.
Uncontrollable spasms and dystonia (stiffening of the body) was all her life had been. The only cure available to treat this disorder is a high-risk surgery known as Deep Brain Stimulation. A chip costing RM150,000 was inserted into her brain which has drastically if not completely eradicated the false impulses, giving Dhia Amanda a chance to continue on without pain.
All in all, Suriana Welfare Society successfully raised RM311,000 for her surgery and after-care.
After Dhia Amanda's success story, Suriana embarked on a deeper journey into helping rare disease sufferers in Malaysia, for individuals and their families, caregivers and loved ones.
25 September 2025, Osteogenesis Imperfecta (Brittle Bone Disease)
A drive to Kuala Selangor to meet Iha Zaliza
Iha Zaliza is 32 years old and lives with one of the more severe variants of "Osteogenesis Imperfecta" (Brittle Bone Disease), leaving her unable to walk and reliant on a wheelchair or crawling to get around. Only her mother knows how to carry her safely without causing fractures, a testament to the extraordinary care and dedication her family has shown throughout her life. When Iha was a child, a hospital visit to seek answers for her condition took a painful turn when doctors suspected abuse and called the police on her parents. It was only after a doctor accidentally broke her arm while trying to move her that the true nature of her medical condition was recognised. Despite these challenges, Iha went on to successfully complete her schooling, with her mother by her side every day, at times writing her notes when fractures made it impossible for her to do so herself.
17 May 2026, Ichthyosis
Day trip to Alor Setar, Kedah, to meet with Firdaus Mehat
Firdaus Mehat, 52, from Alor Setar, is not only the first Malaysian ever to be diagnosed with "Ichthyosis", but also one of its most remarkable advocates. Despite living with one of the more severe variants of the disorder, he has built a fully independent life, holding steady employment, raising a 22 year old son, and earning a respected place in his community. He serves as President of Pertubuhan Kebajikan Pesakit Ichthyosis Malaysia (PEKIM), the only known Ichthyosis centred organisation in Asia, and is deeply committed to supporting others who share his condition. He regularly visits families of newly diagnosed newborns, speaks with patients and caregivers, and has volunteered on numerous occasions as a test subject for new drugs and treatments. His intervention has been life changing for a family in Sungai Petani with two children suffering from the most severe form of the disease, who defied a prognosis of just three months and are now thriving in school.
Suriana Welfare Society continues to work towards implementing awareness & advocacy for rare disease sufferers through trusted community presence and effective partnerships.
Should you require additional information, please feel free to contact us!
