Pitani ku nkhani

Ndondomeko ya umembala

Tanthauzo

Mawu akuti 'membala' ndi 'mamembala' kulikonse komwe alembedwa mu chikalatachi angotanthauza anthu omwe ali ndi EB kapena odziwa zambiri za EB zomwe zikutanthauza kukhala ndi wachibale wapamtima wa EB kuphatikiza omwe amagwira ntchito ngati akatswiri azaumoyo kapena akatswiri ofufuza. mu EB ndi omwe maina awo nthawi ndi nthawi adzasungidwa pa kaundula wa mamembala a DEBRA.

Mamembala omwe atchulidwa pamwambapa ndi osiyana komanso osiyana ndi mamembala ovomerezeka a bungwe lachifundo omwe adzakhala ma Trustees. Gulu losakhala lalamulo ili la umembala likhoza kutchedwa 'mamembala a EB.'

 

cholinga

Bungwe la Ma Trustees la DEBRA limasankha malamulo a Umembala ndi magulu a Umembala monga momwe zimayendetsedwa ndi Articles of Association of DEBRA. Kaundula wa Mamembala adzasungidwa ndi Woyang'anira Umembala.

Ndondomekoyi iti:

  • Khalani omveka bwino komanso omveka bwino pakuyenera kukhala umembala komanso maudindo okhudzana ndi ogwira ntchito ku DEBRA ndi mamembala.
  • Fotokozani zomwe DEBRA ipereka kwa mamembala ndi momwe DEBRA idzazigwiritsire ntchito mogwirizana ndi Makhalidwe a DEBRA.

 

Zolinga

  • Kupanga ndi kusunga ndondomeko ya Umembala yoyendetsedwa bwino yomwe imakopa anthu ku UK omwe akukhala ndi mitundu yonse ya EB, mabanja awo apamtima, osamalira osalipidwa ndi akatswiri azaumoyo ndi ofufuza omwe ali ndi EB.
  • Kukhazikitsa maubwenzi ndikukhala ngati bungwe lapakati la Umembala lomwe limathandizira ndikudziwitsa zambiri komanso zopindulitsa ku Umembala wake ku UK, kudzera munjira zoyankhulirana monga ma media, imelo ndi positi.
  • Kupangitsa mamembala kukhala ndi mawu, ndikuyikapo zofunikira pa DEBRA, mautumiki, ndi makonda.

 

Tsatanetsatane wa Ndondomeko

Kuyenerera umembala:

Umembala umapezeka kwa okhala ku UK omwe amakwaniritsa chimodzi mwazinthu izi:

  1. Kukhala ndi matenda a EB kapena kudikirira kuti adziwe kuti ali ndi EB (owonetsedwa ngati EB ndikuthandizidwa ndi asing'anga)
  2. Banja lapafupi kapena wosamalira osalipidwa wa munthu yemwe wapezeka ndi EB
  3. Gwirani ntchito ngati katswiri wazachipatala (inc. wolera wolipidwa) kapena wofufuza, wokhazikika mu EB kapena khalani ndi chidwi ndi EB
  4. Khalani trasti wa DEBRA kapena membala wa komiti
  5. Khalani trasti wakale wa DEBRA kapena membala wa komiti

 

Tanthauzo:

  • Mkazi waku UK - nyumba yanu yayikulu ili ku UK, ndipo mwalembetsa ndi sing'anga waku UK NHS.
  • Banja lapafupi - kholo, womulera, mkazi/mnzako, mwana, kapena m'bale.
  • Wolera wosalipidwa - Munthu yemwe amapereka chithandizo chothandizira cha EB pa sabata kapena kuposerapo. Thandizoli lidzakhala losiyana ndi zomwe zingafunike kwa munthu wa msinkhu wofanana, yemwe amakhala opanda EB. Mwachitsanzo, wolera wosalipidwa atha kuthandiza ndi utsogoleri wa EB, kusintha kavalidwe, kukonzekera chakudya chapadera kapena chisamaliro chaumwini.

 

Kumene kuyenerera umembala sikukukwaniritsidwa:

Olembera adzadziwitsidwa chifukwa chokana kuvomereza ndipo ngati kuli koyenera kusainidwa kumagulu ena a DEBRA monga kusonkhanitsa ndalama za DEBRA ndi othandizira, kapena mabungwe ndi ntchito zina.

 

Momwe mungakhalire membala

  • Umembala wa DEBRA ndi waulere.
  • Fomu yofunsira umembala iyenera kulembedwa ndikutumizidwa ku gulu la umembala wa DEBRA kuti likakonzedwe.
  • Munthu amene amalemba fomuyo m’malo mwa ena m’mabanjamo amachita zimenezo ndi chilolezo chawo.
  • Aliyense adzapatsidwa nambala yapadera ya umembala ndi mbiri yokhazikitsidwa pankhokwe yathu.
  • Ngati umembala watha/wathetsedwa pafunika fomu ya umembala watsopano.

 

Phindu la umembala

Ubwino umaphatikizapo, koma osalekezera, izi:

  • Kufikira ku Gulu Lothandizira Anthu *
  • Zosintha zamamembala pafupipafupi kudzera pa positi, imelo, ndi media media
  • Kugwiritsa ntchito nyumba zatchuthi za DEBRA UK *
  • thumba la thandizo la DEBRA *
  • Kuyitanira kuzochitika za Amembala athu*
  • Kuchotsera 10% m'masitolo achifundo a DEBRA

*Maganizo ndi zikhalidwe zimagwira ntchito komanso mfundo zogwirizana nazo.

 

Kulankhulana ndi mamembala

  • Kulumikizana ndi zosintha za gulu la EB ndi phindu la umembala wa DEBRA. Chokhacho chomwe sitidzatumiza mauthenga ndi pamene membala wapempha kuti asawalandire.
  • Nthawi zina positi ikatumizidwa kwa mamembala, buku limodzi lokha lidzatumizidwa kunyumba.

 

Umembala Data ndi mbiri

  • Woyang'anira Umembala ndi Mlembi wa Kampani ali ndi udindo wosunga kaundula wa mamembala.
  • Mfundo Zazinsinsi za DEBRA zimakhazikitsa momwe DEBRA imagwiritsira ntchito ndi kuteteza zomwe mumatipatsa. DEBRA nthawi zonse ikonza deta yanu mwachilungamo komanso movomerezeka ndipo idzasonkhanitsa deta kuchokera kwa inu pazifukwa zomwe zafotokozedwa mu Mfundo Zazinsinsi kuti tipereke ntchito zathu ndi kupereka chithandizo.
  • DEBRA imalemekeza zinsinsi za Amembala ndipo sipereka zambiri kwa wina aliyense popanda chilolezo choyenera. Chidziwitso chomwe chasungidwa chidzagawidwa ndi katswiri woyenerera ngati tili okakamizika kutero.
  • Zambiri za Mfundo Zazinsinsi za DEBRA zitha kupezeka pa www.debra.org.uk/privacy.
  • Mamembala ali ndi udindo wolangiza DEBRA za kusintha kwa ma contact awo. Izi ziwonetsetsa kuti tisataye kuyanjana ndi membala ndipo umembala utha ndipo tidzathetsedwa.
  • Fomu yapaintaneti ya 'kusintha kukhala umembala' iyenera kulembedwa. Kapenanso, mamembala atha kudziwitsa gulu la umembala kudzera pa imelo kapena foni.
  • DEBRA idzasunga/kuchotsa munkhokwe munthu aliyense amene sakufunanso kukhala membala, kapena pazifukwa zilizonse zomwe zalembedwa mugawo h.
  • Deta idzayendetsedwa motsatira mfundo ya DEBRA's Data Retention.

 

Kuchotsa umembala

Umembala udzathetsedwa pazifukwa izi:

  • Tikadziwitsidwa kuti membala wamwalira.
  • Pa pempho la membala.
  • DEBRA yasiya kulumikizana ndi membalayo ndipo samatha kulumikizana nawo ka 2 kapena kupitilira apo m'miyezi 12. Chidziwitso choti umembala uchotsedwa chidzatumizidwa, ngati kuli kotheka, kutsatanetsatane womaliza wodziwika womwe ulipo (chitsanzo chingakhale pomwe makalata abwezedwa kawiri m'miyezi 12 ndipo palibe kulumikizana komwe kwatheka kudzera pa foni kapena imelo). Umembala udzabwezeredwa mukalandira zambiri zosinthidwa.
  • Membala sakhalanso ku UK.
  • DEBRA ili ndi ufulu woletsa umembala. Izi zikuphatikiza, koma sizimangokhala, kusagwirizana ndi mfundo za DEBRA kapena zikhalidwe, kapena kuchita m'njira yosawonetsa Makhalidwe a DEBRA.
  • Malekodi a umembala adzasungidwa motsatira ndondomeko ya DEBRA Retention Policy.

 

Kusankhidwa kwa matrasti

Mamembala akulimbikitsidwa kupempha kuti akhale membala wa komiti kapena Trustee wa Charity. Umembala wa komiti ndi mwayi wa Matrasti udzasindikizidwa pa webusayiti ndikukwezedwa ngati njira imodzi yomwe mamembala angatengere gawo ndi DEBRA.

 

Kuwunika kosiyanasiyana

DEBRA yadzipereka kuthandiza anthu okhala ndikugwira ntchito ndi EB. Potipatsa chidziwitso cholondola kudzera mu Fomu Yofunsira Umembala, mumatithandiza kuwonetsetsa kuti tikupereka chithandizo mwachilungamo kwa mamembala athu onse ndikuthandizira kupanga njira yathu yofikira mamembala atsopano mtsogolo. DEBRA's Equality, Diversity & Inclusion policy lembedwa mu matsamba otsatila.

 

Kuyamikira ndi madandaulo

Ngati membala akufuna kutulutsa nkhawa, kudandaula kapena kupereka chiyamiko pa chilichonse chokhudzana ndi Umembala kapena dongosolo la Umembala, ayenera kulumikizana ndi Woyang'anira Umembala. Ndondomeko ya DEBRA pa Nkhawa, madandaulo ndi kuyamika lembedwa mu matsamba otsatila.

 

Zikalata zolozera