Amaqembu Wokukhuthaza Kwalabo abanezifo ze-Crohn & Ulcerative Colitis
Ukuxilongwa kwesifo sofuba (IBD) esivuvukalayo kuletha uchungechunge lwemibuzo nezinselele. Futhi iziguli eziningi zizama ukuthola usizo ekuqondeni isifo sabo nokuxhuma nezinye iziguli. Kulabo abahlala nesifo sikaCrohn kanye nesifo sochungechunge, kunezinhlangano eziningi zokusiza nezinhlangano ezingenzi inzuzo ezinikela ngezinsiza ezihlukahlukene ukusiza ekuhambeni impilo ne-IBD.
Amaqembu anjalo anikela konke kusuka ekusekelweni komuntu, kumathrekhi osizo lwefoni, ukusiza ngezindleko zezokwelapha kanye nemibandela yokukhubazeka. Ukuxhuma nenhlangano yenkxaso yendawo ye-IBD nokwamukela ulwazi kanye nosizo olunikezwa yingxenye ebalulekile yohambo lwesiguli kanye nolunye olungasiza ekunciphiseni ezinye izinselele ze-IBD. Ngezansi, thola amaqembu asekela isiguli ase-United States, Canada, naseYurophu abanikele ngemithombo yabo yokusiza iziguli.
I-Crohn's & Colitis Foundation
I-Crohn's & Colitis Foundation (eyaziwa nangokuthi iSisekelo) yiqembu elikhulu kunazo zonke elingekho inzuzo elizinikele ekukhonzeni abantu abane-IBD e-United States. Eyasungulwa ekuqaleni ngo-1967 njenge-National Foundation ye-Ileitis ne-Colitis, isisekelo sisekelwa ngeminikelo evela kokubili abasekeli kanye nomkhakha. I-Crohn's & Colitis Foundation inenethiwekhi enkulu, kuhlanganise nithathe izinyathelo kanye ne-spin4 Crohn's & colitis.
Abantu abane-IBD bangasebenzisa amaqembu okusekela kuphela asekhaya, kepha futhi:
- Inkampu yehlobo ehlinzekwa izingane ezine-IBD
- Isikhungo Sosizo se-IBD, lapho iziguli nabanakekeli bangakwazi ukuxhuma nomchwepheshe we-IBD nge-imeyili noma efonini
- I-Crohn's & Colitis Community, iqembu lokusekela inthanethi lapho iziguli nabanakekeli bangakwazi ukuxhuma cishe
- Imizamo yocwaningo lwamanje exhaswe yiSisekelo nabalingani babo
- Imizamo yokugqugquzela ukuthi iqhubekisele phambili izithakazelo zeziguli kanye nabaqeqeshi bezempilo ezinhlanganweni zikahulumeni futhi ihlinzekele ngemali yokucwaninga
- I-National Council of College Leaders (NCCL), iqembu elisekelwe entsheni elisebenzela ukwandisa imfundo nokusekela abantu abane-IBD ngokusebenzisa izinhlelo ezihlukahlukene zokugqugquzela nokuxhasa imali
- Ubulungu ku-Crohn's & Colitis Foundation kubantu abane-IBD noma noma ubani onentshisekelo ekusizeni labo abane-IBD (ngeminikelo encane)
Crohn's noColitis Canada
I-Crohn's neColitis Canada yasungulwa ngo-1974 yiqembu leziguli ezingu-20 nabanakekeli abathintekayo yi-IBD. Isisekelo sinikeza izinsizakalo ezihlukahlukene zokusekela kulabo abane-IBD abahlala eCanada, okuyinto empeleni engenye yamazwe aphethwe yizifo.
Ukusuka ekuthobekeni okuthobekile ekamelweni lokufundela eligcwele abantu ababekhathazekile ukuthi kwakungekho izinsizakalo zemfundo noma izinhlelo zokucwaninga ezisekela labo abane-IBD noma ukwelashwa, uye wakhula waba yisisetshenziswa somhlaba wonke ngezahluko zendawo ezingu-45. Kuze kube manje, liye laphakamisa i $ 100 million.
I-Crohn's neColitis Canada isekela izinhlelo eziningana zokucwaninga ezingahlanganisi nje ukuthuthukiswa kwezidakamizwa ezintsha, kodwa futhi okugxile ekuthuthukiseni izinga lempilo kulabo abane-IBD. Okunye okugxilwe ucwaningo yi-Project GEM, ehlose ukuqonda izimbangela ze-IBD ngokutadisha labo abasengozini yokuthuthukisa uhlobo lwesifo.
Abantu abane-IBD bangahlanganyela noCrohn's noColitis Canada ngokusebenzisa izinhlelo zabo eziningi ezibandakanya:
- Ukuhamba kwe-Gutsy, ukuhamba ngezimali okusiza iziguli ukuba zilungele
- I-Camp Got2Go (izindawo ezimbili eCanada)
- Uhlelo lwe-IBD lwezifundo olunikeza ama-10 ama-scholarship imiklomelo yesikhathi esisodwa esisodwa kuze kufike ku-$ 5,000 kubafundi abane-IBD abathola imfundo ye-post-secondary
- I-Gutsy Learning Series eyenza amavidiyo amaningana abantu abane-IBD abangasebenzisa ukuze bafunde kabanzi ngesifo sabo
I-Crohn's & Colitis UK
I-Crohn & & Colitis UK iyisikhungo esisekelwe e-United Kingdom esinikeza ukusekela kanye nolwazi kulabo abahlala ne-IBD. Ngaphezu kwalokho, isekela futhi ixhase ucwaningo olufuna "ukuthuthukisa izimpilo zabantu abaneminyaka yonke abanesifo sikaCrohn noma isifo sofuba."
Eyasungulwa ngo-1979, i-Crohn's & Colitis UK inezinhlelo ezifana ne-UK ne-Family Network ezinikezela imicimbi ejabulisayo neziqondiso zabazali bezingane abane-IBD abanenkinga ekhethekile, njengokuhamba ngesistimu yesikole ngesifo esingapheli.
Ezinye izinzuzo ezinikezwa yi-Crohn's & Colitis UK zihlanganisa:
- Isibonelelo Sokuthi iziguli nabanakekeli bangakwazi ukuxhuma nontanga ukuze banikeze izaphulelo zemfundo nezidingo zansuku zonke
- Izinzuzo zokukhubazeka lapho abantu abane-IBD e-UK bengase bafanelekele futhi bangakwazi ukuhamba kangcono usizo lukaCrohn's & Colitis UK
- Uhlelo lwezeMpilo oluPhezulu oluhlinzeka ngezigameko zomuntu ngeziguli ukuze ufunde kabanzi ngesifo sabo
- Hamba! izenzakalo kulo lonke elase-UK enikeza ithuba leziguli ukuxhaswa nge-Crohn's & Colitis UK kanye nokuhlangana nezinye iziguli nabanakekeli
Crohn's & Colitis Australia
I-Crohn's & Colitis Australia (CCA) inhlangano engeyona inzuzo eyenzelwe "ukwenza ukuphila kube khona okukhululekayo" kubantu abahlala ne-IBD e-Australia. I-CCA yasungulwa eminyakeni engaphezu kwengu-30 edlule futhi yaziwa ngaphambili ngokuthi yi-Australian Crohn's and Colitis Association.
I-CCA ibamba iqhaza ekufundeni ucwaningo futhi inikeza izifundo zokufunda ze-postgraduate, kodwa injongo yazo eyinhloko ukusekela iziguli ze-IBD. Imithombo yemali yezinhlelo zabo ihlanganisa iminikelo kanye nokuxhaswa kwemali yomphakathi.
Abantu abathintekayo yi-IBD bangaba ngamalungu futhi bangamukele i- Insight engaphakathi , umagazini we-CCA, ikhadi le- "Akukwazi ukulinda," nokufinyelela esigabeni samalungu kuphela sewebhu. Ezinye zezinhlelo nezinsizakalo ezihlinzekwa yi-Crohn's & Colitis Australia zifaka:
- Amaqembu okusekela ngaphakathi komuntu wonke e-Australia avulelekile kubantu abaphila ngokubambisana ne-IBD
- Amaqembu we-Pop-Up for fundraising ukusekela umphakathi we-IBD
- I-IBD Helpline (1-800-138-029) enikeza ukusekelwa ngokomzwelo nokudluliselwa phezu kwefoni
- Ukuguqula Inselele Yezinkinga lapho abahlanganyeli abangagijima khona, ukugibela, noma ukuhamba ngebhayisikili ukuqoqa izimali ezisekela izinhlelo ze-CCA
Ukuxhuma Ukwelapha i-Crohn's ne-Colitis
Ukuxhuma Ukwelapha i-Crohn's ne-Colitis (C kuya ku-C) yinhlangano engenzi inzuzo eyakhiwe ukusekela iziguli ezine-IBD. Eyasungulwa nguStacy Dylan, unina wengane ephila ne-Crohn's disease, noDana Zatulove, unina wengane ephila ne-ulcerative colitis, leli qembu lizibophezele ekucwaningweni kwezimali okugxile ekuqondeni izimbangela ze-IBD kanye nokuvimbela labo abakuleli ingozi enkulu yokuthuthukisa i-IBD.
C kuya C iphakamisa izimali ngeminikelo, i-gala yonyaka, i-Rock the Night yokuphulukisa i-Crohn's ne-Colitis, i-Chip emidlalweni yegalofu ye-Crohn, kanye ne-piano yezingane ze-piano. Baphinde babambisane neCedars-Sinai Medical Center eLos Angeles ukunikeza amaqembu asekela abantu abathintekayo yi-IBD, kuhlanganise neziguli, abahlinzeki, izingane kanye nemindeni.
Amantombazane Anama-Guts
Amantombazane anamaGuts (GWG) yinhlangano engenzi inzuzo eyasungulwa nguJackie Zimmerman ngemuva kokuphendula okuhle empelasonto engakahleleki yokuxhuma kumuntu kanye nabanye besifazane abane-IBD abonise isidingo senethiwekhi yokusekela abesifazane. Amantombazane anama-Retreats ama-Guts yizinhlangano zokuhlangana zamasonto onke ezisiza abesifazane abane-IBD ukuba bakhe ubungane obunamandla futhi bafunde ukuthi bangaphila kangcono ngesifo sabo.
I-GWG iphakamisa izimali ngeminikelo eqondile nemicimbi, njenge-global 5k. Baphinde banikeze umphakathi we-IBD ngeqembu elizimele le-Facebook labesifazane abathintekayo yi-IBD, amavidiyo omniningwane, kanye nohlelo lwe-pen-pal lensimbi.
I-ImproveCareNow
I-ImproveCareNow yiqembu elingenzi inzuzo eliye ladala inethiwekhi yeziguli, imindeni, abanakekeli, kanye nabachwepheshe bezempilo ukuze bathuthukise ukunakekelwa okutholakala izingane eziphila nesifo sikaCrohn kanye nesifo sofuba. Basisekela ucwaningo olwenzelwe futhi lwenziwe ukufaka iziguli nemindeni ethintekayo yi-IBD.
Izinzuzo ezinikezwe umphakathi wegciwane le-IBD nge-ImproveCareNow zihlanganisa amathuluzi okuhlala ne-IBD, njengezincwadi zokuzilawula, abahleli bezokuvakasha kanye ne-ImproveCareNow Exchange, indawo evikelekile lapho abahlanganyeli bangabelana ngolwazi. Izinkomfa zomphakathi ezithuthukisiwe zithuthukiswa njalo ngonyaka entwasahlobo nokuwa. Inhlangano iphakamisa izimali ngeminikelo eqondile kanye nokubambisana nemiboni nabalingani bomphakathi.
Izwi elivela
Ukuhlola ukuxilongwa kwe-IBD kuyinselele enzima ukuthi kungani iziguli akufanele zihambe zodwa. Odokotela kanye nabanakekeli bangabasiza kakhulu, kodwa abantu abaphila nesifo sikaCrohn kanye nesifo sofuba esiswini bazodinga ukusekelwa okwengeziwe ekuhambeni kwabo kwezifo.
Yingakho amaqembu amaningi asekela ukubekezela ngesiguli ayenze ikakhulukazi ezindaweni lapho i-IBD ivame kakhulu, njenge-United States, Canada, neYurophu. Abantu abane-IBD kufanele basebenzise ngokunakekelwa ngeminikelo yalezi zinhlelo zokusekela ze-IBD ezinikezela ukuze baphile impilo yabo engcono kakhulu.