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Here are a collection of providers to make Marfan care more manageable
University Malaya Medical Centre (UMMC or PPUM Pusat Perubatan Universiti Malaya) Kuala Lumpur
Genetic clinic runs on Wednesdays. It is sharing the clinic consultation space with paediatric clinic at the Women and Children Health Complex building. To get an appointment, a referral letter is needed to submit by hand to the paediatric registration counter.
Headed by Prof Dr Thong Meow Keong and Dr Tae Sok Kun
Other supporting clinics are also available here, including Cardio, Scoliosis, Ophthalmology, Respiratory, Dental, Physiotherapy, Orthotics etc.
Hospital Kuala Lumpur (HKL or KL GH General Hospital)
Headed by Dr Ngu Lock Hock.
Largest team of genetic specialist in Malaysia
For more info, see here.
Sunway Hospital Bandar Sunway (Sunway Child Centre)
Newly setup at time of writing. For more info, see here.
Also headed by Prof Dr Thong Meow Keong, originally from Universiti Malaya
Hospital Pulau Pinang HPP
Headed by Dr. Ch'ng Gaik Siew
For more info, see here.
National Heart Institute (IJN Institut Jantung Negara), Kuala Lumpur
For cardiology and cardiothoracic surgery cases. They use to have a genetic clinic for paediatrics, but this clinic has since closed.
Government hospitals may use overseas labs for genetic testing done at their respective clinic's discretion. Private labs include:
AGTC Genomics, Bukit Jalil Kuala Lumpur. For more info, see here.
Our experience has been rigid (hard) brace type is needed instead of soft brace.
BioApps Universiti Malaya
if you are doing Scoliosis follow up with the hospital, they may recommend you to get body brace from here. They are located at G floor, South Tower.
For more info, see here.
Teh Lin Pros & Ortho, branches throughout Peninsular Malaysia
One of the longest serving providers with roots from Taiwan.
For more info, see here.
Scoliospine, Petaling Jaya
Headed by Ms. Vern, formerly of Universiti Malaya orthotics team. Also have Schroth method and SEAS method therapy available.
For more info, see here.
Limb Brace Rehab Appliances
For more info, see here.
Coming soon!
Non profit organization for Rare Diseases (RD) in Malaysia. Among the core items of the society are raising awareness, supporting RD individuals and families, establish policy/acts. You may sign up as a member.
For more info on MRDS, click here
A Marfan genetic research study based in Belgium. Participation is via online registration and genetic sampling is via saliva kit. All cost of the kit and logistics is borne by the research group i.e. Free of Charge FoC. Available to any country globally reachable by major courier services. For Malaysia, Fedex is used.
The website by default is in French language, but English language is available too.
For more info on 101Genomes GEMS, click here