Source

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.

 

458 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
  71. Pingback: Agence publicite
  72. Pingback: lazyboyz
  73. Pingback: bucumarket
  74. Pingback: antiochfc
  75. Pingback: tdouglaslaw
  76. Pingback: sdeyelift
  77. Pingback: salmanhan
  78. Pingback: stmnational
  79. Pingback: bikeasea
  80. Pingback: eleikoitalia
  81. Pingback: asisdesigns
  82. Pingback: bjgruppen
  83. Pingback: energistech
  84. Pingback: sogohalf
  85. Pingback: drivingmama
  86. Pingback: Mac akku service
  87. Pingback: debagliano
  88. Pingback: salmalist
  89. Pingback: Livestock for sale
  90. Pingback: swiehiantan
  91. Pingback: fantasyartz
  92. Pingback: odgwormald
  93. Pingback: atmylodge
  94. Pingback: stephensng
  95. Pingback: best male sex toys
  96. Pingback: toptorah
  97. Pingback: tuadventure
  98. Pingback: aptarismrm
  99. Pingback: tuckaghrie
  100. Pingback: transcapins
  101. Pingback: stravinci
  102. Pingback: autodealsva
  103. Pingback: bellbiv
  104. Pingback: wunderboys
  105. Pingback: casahirta
  106. Pingback: buoniditalia
  107. Pingback: ascarov
  108. Pingback: bebbrescia
  109. Pingback: edwinraben
  110. Pingback: fswriting
  111. Pingback: respigar
  112. Pingback: fotodifood
  113. Pingback: monctondjs
  114. Pingback: myloweslife login
  115. Pingback: puenthai
  116. Pingback: requeil
  117. Pingback: samsunlobe
  118. Pingback: tosseldorf
  119. Pingback: bradscharf
  120. Pingback: sedfab
  121. Pingback: tealsolar
  122. Pingback: WEED PUFF BAR
  123. Pingback: stormsglass
  124. Pingback: thpcstore
  125. Pingback: toruseurope
  126. Pingback: sinspi
  127. Pingback: sig p938 academy
  128. Pingback: sig p938 for sale
  129. Pingback: miltonsport
  130. Pingback: magic mushrooms
  131. Pingback: magic mushrooms
  132. Pingback: jbtbrains
  133. Pingback: dmealliance
  134. Pingback: designinator
  135. Pingback: bcapalt
  136. Pingback: laeamerica
  137. Pingback: bucuburger
  138. Pingback: mfaads
  139. Pingback: juul mango pods
  140. Pingback: salankhan
  141. Pingback: bksignature
  142. Pingback: azoils
  143. Pingback: coptagon
  144. Pingback: dominokirke
  145. Pingback: coleygov
  146. Pingback: chillievent
  147. Pingback: wpmobx
  148. Pingback: baltiktur
  149. Pingback: One Time Email
  150. Pingback: top stocks
  151. Pingback: comunidadmh
  152. Pingback: statencom
  153. Pingback: skwpartners
  154. Pingback: buy pills florida
  155. Pingback: copdnebulizer
  156. Pingback: tildesheim
  157. Pingback: RissMiner
  158. Pingback: malloferta
  159. Pingback: beernegociant
  160. Pingback: candywires
  161. Pingback: vertigo
  162. Pingback: bitcoin
  163. Pingback: freedomqdro
  164. Pingback: muthee kiengei
  165. Pingback: etcshowchoir
  166. Pingback: Temp EMail
  167. Pingback: gestiarchivos
  168. Pingback: Temp EMail
  169. Pingback: Uganda Tour
  170. Pingback: beretta pistols
  171. Pingback: koenigpalast
  172. Pingback: male stroker
  173. Pingback: calmission
  174. Pingback: jetoxco
  175. Pingback: Grand Seiko
  176. Pingback: asecondmind
  177. Pingback: dank sinatra
  178. Pingback: visit here
  179. Pingback: greatescapecompany
  180. Pingback: pecintapkr
  181. Pingback: happyLuke
  182. Pingback: annalowther
  183. Pingback: czaterianie
  184. Pingback: furosemide pills
  185. Pingback: neurontin pill
  186. Pingback: hotelsamet
  187. Pingback: plaquenil price
  188. Pingback: prednisone 10mg
  189. Pingback: painmm
  190. Pingback: austinaame
  191. Pingback: avana prices
  192. Pingback: ivermectin 3 mg
  193. Pingback: juul pods
  194. Pingback: ventolin otc
  195. Pingback: beiritters
  196. Pingback: neurontin 400
  197. Pingback: gabrichmed
  198. Pingback: plaquenil 100 mg
  199. Pingback: zithromax purchase
  200. Pingback: sprachmuster
  201. Pingback: gocstech
  202. Pingback: earcandyllc
  203. Pingback: alaskawallart
  204. Pingback: buynaoh
  205. Pingback: happyruck
  206. Pingback: NMD News
  207. Pingback: happyruck
  208. Pingback: virtual card buy
  209. Pingback: paxpod
  210. Pingback: funphotoprops
  211. Pingback: e-liquids
  212. Pingback: innostorplus
  213. Pingback: Temp EMail
  214. Pingback: portable generator
  215. Pingback: the fuzz
  216. Pingback: ultraman leo
  217. Pingback: Adderall for sale
  218. Pingback: Shroom Edibles
  219. Pingback: DailyCBD
  220. Pingback: beretta cheetah
  221. Pingback: ajpaircon
  222. Pingback: kimber firearms
  223. Pingback: luststyle
  224. Pingback: naroutdoor
  225. Pingback: chloroquinemd
  226. Pingback: THC Oil for Sale
  227. Pingback: euroweims
  228. Pingback: henry lever 45/70
  229. Pingback: healthtrakz
  230. Pingback: stiizy
  231. Pingback: njbulk
  232. Pingback: sig p238
  233. Pingback: navelko
  234. Pingback: peterbregg
  235. Pingback: curatorstl
  236. Pingback: badazzshoes
  237. Pingback: takeout food
  238. Pingback: azurewest
  239. Pingback: lisawilbur
  240. Pingback: vfokus
  241. Pingback: barreporting
  242. Pingback: masszimi
  243. Pingback: alarmstl
  244. Pingback: BUY GUNS ONLINE
  245. Pingback: annamarmo
  246. Pingback: nanopose
  247. Pingback: Best Guns For Sale
  248. Pingback: qdnatool
  249. Pingback: siefertmurphy
  250. Pingback: gcclcareers
  251. Pingback: uca.com.vn
  252. Pingback: cctphones
  253. Pingback: joaforma
  254. Pingback: kagankorea
  255. Pingback: zivougim
  256. Pingback: puppiesfm
  257. Pingback: mp3 download
  258. Pingback: gbl for sale uk
  259. Pingback: luftstoff
  260. Pingback: turkletalks
  261. Pingback: doctordomson
  262. Pingback: fablabsea
  263. Pingback: DIY Home Projects
  264. Pingback: lottoguesses
  265. Pingback: fanblogbook
  266. Pingback: thewaha
  267. Pingback: lindblomgd
  268. Pingback: sixxtees
  269. Pingback: dandyteru
  270. Pingback: rightwaysport
  271. Pingback: mt-amazon
  272. Pingback: novaartmimarlik
  273. Pingback: deponotes
  274. Pingback: domain hosting buy
  275. Pingback: scoutsportswear
  276. Pingback: ruger 57 for sale
  277. Pingback: hellobinh
  278. Pingback: dmgmicroset
  279. Pingback: bulletandkitch
  280. Pingback: soccerprorc
  281. Pingback: clit vibrators
  282. Pingback: solanolaws
  283. Pingback: big black dildo
  284. Pingback: blacknethub
  285. Pingback: Masum
  286. Pingback: kenya university
  287. Pingback: newmexicobaconfest
  288. Pingback: divorce lawyers
  289. Pingback: Motorbike Gloves
  290. Pingback: memosaqee
  291. Pingback: ibestride
  292. Pingback: HELEX PILLS
  293. Pingback: menacingkittens
  294. Pingback: azhar-online
  295. Pingback: codexivetech
  296. Pingback: krt cart
  297. Pingback: diskusicantik
  298. Pingback: krt disposable
  299. Pingback: myspoleto
  300. Pingback: bajabutt
  301. Pingback: bayandanal
  302. Pingback: koratsci
  303. Pingback: winasms
  304. Pingback: rcnutricion
  305. Pingback: calimercado
  306. Pingback: indian-superstar
  307. Pingback: varsityfanclub
  308. Pingback: lapioo
  309. Pingback: eratodharti
  310. Pingback: boolsos
  311. Pingback: cedizmir
  312. Pingback: alexphy
  313. Pingback: sex toys for women
  314. Pingback: Kilimanjaro Trek
  315. Pingback: selivia
  316. Pingback: vedspace
  317. Pingback: fermomia
  318. Pingback: meritroyalbet
  319. Pingback: elexusbet
  320. Pingback: madridbet
  321. Pingback: meritroyalbet
  322. Pingback: meritking
  323. Pingback: meritking
  324. Pingback: eurocasino
  325. Pingback: lebsocial
  326. Pingback: eurocasino
  327. Pingback: trcasino
  328. Pingback: elexusbet
X