Sometimes, a parent's journey begins with a question no parent should have to ask alone:
Why is my child different,
and why does no one seem to have an answer?
Rare diseases often hide behind vague symptoms and unfamiliar names,
leaving parents to search for a diagnosis for years while it quietly shapes every part of their child's daily life.
"Orphan Diseases",
commonly known as rare diseases, are medical conditions that affects a small percentage of people.
Because there aren't enough patients to make treatment development profitable, many of these conditions went unstudied and unaddressed for years.
The term "orphan" reflects this neglect, diseases left without the attention.
It was out of this neglect that Suriana Welfare Society began "Because It's Rare, We Care", an initiative 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 improve access to care & provide holistic support for rare disease sufferers.
With the aim to create a more supportive ecosystem for children affected by rare diseases, Suriana is currently working alongside pioneers of the field to prioritize compassionate support for every family affected.
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
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
Progress since February 2026 to present
Founding Advocate Program
Development of early financial sponsors, Medical Advisors, Healthcare Partnerships and Corporate Partners
Partnership with patient advocacy groups
(e.g. MRDS, PEKIM)
Digital & Social
Media Campaign
In-house short-film documentaries for social media awareness, media partnerships with Free Malaysia Today and BFM Radio for interviews with patients diagnosed with rare diseases
UMMC Genetic
Testing Fund
Seed funding pledge for Genetic Testing through UMMC's social welfare organisation and patient referral through UMMC geneticists
Financial Support
& Family Intervention
Financial aid for patients requiring treatment, identification of candidates specifically for Deep Brain Stimulation and crowd funding through the media
Community Fundraising
Music Concert
"Harmony for the
Rare & Brave"
21-22 November 2026
27 July 2026
In The Studio Podcast Interview with Firdaus Mehat (diagnosed with Ichthyosis)
“Ibu bapa selalu gunakan kondisi kami untuk menakutkan anak-anak mereka” - Firdaus, Pengasas PEKIM
Firdaus, Pengasas Pertubuhan Kebajikan Pesakit Ichthyosis Malaysia (PEKIM) menceritakan pengalamannya sebagai seorang penghidap iktiosis:
• Perbezaan antara iktiosis dan psoriasis
• Diskriminasi yang dihadapi daripada masyarakat
• Kos yang perlu ditanggung
• Harapan untuk pengidap lain
Dengarkan kisah Firdaus dalam Bahasa Inggeris melalui podcast audio “Health and Living” di laman web BFM, BFM app, Spotify dan Apple Podcast.
🎙️Beyond the Diagnosis #41: Don’t Fight Ichthyosis, Fight For Your Rights
25 June 2026
Media Interview with Firdaus Mehat on being diagnosed with Ichthyosis
"‘The bomohs wanted to help’: Firdaus’s journey with ichthyosis"
Growing up in Alor Setar in the 1970s, Firdaus is believed to have been the first Malaysian diagnosed with the disease. Public awareness was virtually non-existent and even doctors knew little about it at the time.
“People had never seen someone like me before,” he said. “Some thought it was contagious. Some thought it was a curse. Some thought something supernatural had happened.”
As a child, he found himself caught between traditional beliefs and modern medicine.
“I was like a living experiment,” he added with a chuckle. “Everybody wanted to try something. The doctors wanted to help, the bomohs wanted to help. None of them worked, of course.” Read more...
25 May 2026
Podcast Interview with Saifol Sujak, father of Dhia Amanda (diagnosed with GNA01)
"Beyond The Diagnosis is a series that goes beyond a medical diagnosis to explore people’s personal experiences, their challenges, as well as the impact of their health condition on their loved ones. Suriana Welfare Society is supporting families of children with rare diseases through advocacy and fundraising.
We catch up with Amanda’s father Saifol Sujak Sulaiman, to find out how she’s doing now. We also speak to Rachel Ho from Suriana Welfare Society about Amanda’s fundraising journey, and to consultant paediatric neurologist Dr Lim Wei Kang about how rare diseases like GNAO1 develop."
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.
07 May 2026, 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.
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.
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!
