Did you know that the last day of February is Rare Disease Day? 

Well, this year, the Malaysian Rare Disorders Society (MRDS) took the opportunity to celebrate the day and highlight the plight of people suffering from rare diseases. 

MRDS is also lobbying for sufferers to be categorised as disabled or OKU.

President Datuk Hatijah Ayob said the organisation would work towards improving the lives of patients and families with rare disorders.

“We have gathered together rare disorder patients under MRDS to let patients know that they are not alone. We will work together and help each other to identify the problems,” said Hatijah.

She said Rare Disease Day 2017 was an opportunity for those afflicted to voice their opinion and give suggestions to the OKU Development Department (JPOKU).

“JPOKU should consider people with rare diseases as another category of disabled people because their disorders may cause them physical and mental disability over the long term. 

“Patients face difficulty in applying for a job compared to regular people. Society should give them a chance, especially the private sector.

“Most medicine for rare disorder patients are difficult to source and expensive in Malaysia. So, we hope to get assistance from the pharmaceutical industry, as well as the Government, to find solutions to reduce prices.

JPOKU chief deputy director Pathmanathan Nalasamy said the department was working with MRDS on categorising people with rare disorders as OKU.

“Currently, resolving the issue of people with rare disease as another category under OKU is still a work in progress,” he said. 

Pathmanathan noted that some already met JPOKU’s existing criteria and were eligible to apply for an OKU card and enjoy the welfare benefits offered by the Government. 

Juliana Louise, 36, who has fibrodysplasia ossificans progressiva (FOP) disease, said she experienced a lot of difficulty in moving about as many places in the country were still not OKU-friendly, with the exception of Kuala Lumpur.

“Most areas of Kuala Lumpur are OKU-friendly with suitable infrastructure compared to the other states in Malaysia.

“I also find that people in Malaysia are usually not bothered about helping an OKU, especially if that person is a stranger.

“I am still working in accounting, even though I have difficulty moving about. We appreciate the MRDS committee’s effort. I hope they can help other families and especially children affected by rare diseases,” she said.


106 thoughts on “Seeking OKU Status for Rare Disease Sufferers”

  1. Pingback: kalmhc
  2. Pingback: eddmtogo
  3. Pingback: xenical pill
  4. Pingback: propecia cost
  5. Pingback: stonessmile
  6. Pingback: careprost
  7. Pingback: radiohaatuf
  8. Pingback: ncgrassfed
  9. Pingback: judycarlton
  10. Pingback: therawplate
  11. Pingback: kabatecnico
  12. Pingback: cialis 100mg india
  13. Pingback: spacesmacks
  14. Pingback: etuevt
  15. Pingback: leekoil
  16. Pingback: peekapets
  17. Pingback: sotalol and cipro
  18. Pingback: limosonoma
  19. Pingback: tadalafil 5 mg
  20. Pingback: viagra discounts
  21. Pingback: sildenafil walmart
  22. Pingback: wanakahomes
  23. Pingback: comeemcasa
  24. Pingback: sisdrog
  25. Pingback: sarahlynnw
  26. Pingback: gostpauldodge
  27. Pingback: umarked
  28. Pingback: billsodds
  29. Pingback: chinookpier
  30. Pingback: knowmorris
  31. Pingback: prippinvest
  32. Pingback: turfflags
  33. Pingback: vtlasers
  34. Pingback: Google
  35. Pingback: lafdental
  36. Pingback: sitool
  37. Pingback: twittogram
  38. Pingback: mmmeliacakes
  39. Pingback: MILF Porn
  40. Pingback: pedsbif
  41. Pingback: Google
  42. Pingback: Weed Wax
  43. Pingback: saatlik escort
  44. Pingback: 99defi p2p network
  45. Pingback: streamcomplet
  46. Pingback: french streaming
  47. Pingback: streaming gratuit
  48. Pingback: eklandia
  49. Pingback: pascalneveu
  50. Pingback: twitter to mp4
  51. Pingback: sucrehoteles
  52. Pingback: sex education
  53. Pingback: kwtagri
  54. Pingback: thrusting rabbit
  55. Pingback: best in ottawa
  56. Pingback: dmi meerut
  57. Pingback: 메이저사이트
  58. Pingback: 피망포커머니
  59. Pingback: btcpaygo
  60. Pingback: weareguthrie
  61. Pingback: refreshbr
  62. Pingback: Thc juul pods
  63. Pingback: badedas
  64. Pingback: seacrs
  65. Pingback: Thc vape juice
  66. Pingback: KETASET FOR SALE
  67. Pingback: rabbit vibrator
  68. Pingback: alfindustry
  69. Pingback: mp3juice
  70. Pingback: Stiiizy Pods