Yintoni efanelekileyo isifo njengesingqabileyo?
Isifo esinqabileyo sisenzeka kubantu abangaphantsi kwe-200,000 e-United States kunye nabangaphantsi kwama-5 ngabanye abantu abayi-10 000 kwi-European Union. Njengoko unokuqiqa, zikhona ezinye izifo ezichaphazela kuphela inani elincinci labantu kwihlabathi. Kwaye kukho ezinye izifo eziyinyani-ze-uhlobo, ngokuqhelekileyo zenzeka ngenxa yesiphene sokuzalwa.
Ezinye izifo zixhaphake kwiindawo ezithile zehlabathi kodwa ziqabile kwabanye. Kuqikelelwa ukuba kukho phakathi kwama-5 000 no-8 000 izifo ezingaqhelekanga kwihlabathi.
Ndifuna ukwazi ukuba isifo esithile sithathwa njengesinqabileyo.
I-Ofisi ye-US ye-Rare Diseases ine-uludwe lwezifo ezingaphezu kwezi-6,000 ezibhekwa njengeziqabile e-United States.
Ndifuna ulwazi malunga nesifo esinqabileyo.
Unokwazi ukubheka uluhlu lwama-alfabhethi ngegama lesifo. Ukuba awukwazi igama okanye indlela yokuyipela, unokujonga kwiintlobo zephepha lezifo kule ndawo ukuze uluhlu ludidiwe ngohlobo (umzekelo, ukuphazamiseka kwengqondo, ukuphazamiseka kwesikhumba, njl.).
Ndifuna ulwazi malunga nesifo esinqabileyo esingafakwa kuso kwisayithi lakho.
Ukuba awufumani nto oyifunayo, jonga ezi ndawo:
- EUnited States: Iziko leNgcaciso yeGenestic and Rare Infos, apho ungaqhagamshelana nomntu ophilileyo ngemibuzo ethile malunga nesifo sakho.
- E-UK: Qhagamshelana ne-Index Index yentsapho yeemeko ezicacileyo kunye neengxaki ezinzima
- EYurophu: I-Orphanet - ifumaneka ngeelwimi ezili-6: isiNgesi, isiFrentshi, isiJamani, isiNtaliyane, iSpanish nesiPutukezi.
Ndingayifumana njani iqela lokuxhasa isifo okanye isifo esithile?
Okokuqala, khangela iqaku malunga nenkinga kwisayithi. Unokwazi ukujonga iindidi zezifo zezifo kule ndawo ukuze uluhlu ukuba awukwazi igama le-disorder.
Eli nqaku liya kuba nekhonkco kumaqela axhasayo. Ukuba asikho nento malunga neengxaki, zama iphepha leZibonelelo zamaqela ezenkxaso, ezidibanisa kwiinkalo ezahlukeneyo zezifo eziqhelekileyo ze-US kunye nezizwe ngezizwe.