Zofunikira pa kafukufuku wa EB zidawululidwa pa phwando la House of Commons
Dzulo usiku (June 17) tinachita phwando lamadzulo ku House of Commons ku London.
Chikondwererochi chinathandizidwa ndi Gareth Bacon, MP wa Orpington ndipo chinachitika ku Terrace Pavilion m'mphepete mwa Mtsinje wa Thames.
Cholinga chachikulu cha mwambowu chinali kugawana zotsatira za EB Priority Setting Partnership. Kafukufuku watsopano wofunikirawu wapeza zofunikira kwambiri pa kafukufuku wamtundu uliwonse mwa mitundu inayi ikuluikulu ya EB. Chochitikacho chinalinso mwayi kwa mamembala kuti azilumikizana wina ndi mzake, komanso ndi aphungu, othandizira, ndi kafukufuku wa EB ndi akatswiri azaumoyo.
Tikuthokoza kwambiri mamembala athu ndi alendo omwe adabwera nafe usiku watha, ndi kwa okamba athu. Izi zinaphatikizapo mamembala a DEBRA ndi akazembe, Kate White ndi Vie Portland, omwe onse adalankhula mokhudzidwa ndi momwe EB yakhudzira miyoyo yawo. Dr Anna Martinez, yemwe adalankhula za EB Priority Setting Partnership ndi momwe amaperekera njira yomveka bwino ya kafukufuku wamtsogolo wa EB. Pulofesa Andrew Thompson, yemwe adalankhula za chida chatsopano chothandizira thanzi la makolo ndi ana omwe ali ndi EB. Ndi Gareth Bacon MP, ndi Peter Swallow MP wa Bracknell. Ndife okondwa kuwerengera pa thandizo la aphungu awiri ochokera mbali zosiyanasiyana za nyumbayi. Onse angakhale ndi maganizo osiyana pa ndale, koma adzipereka kugwira ntchito limodzi kuti athandize gulu la EB.
Ngati ndinu membala wa DEBRA ndipo mukufuna kutero kutenga nawo mbali pa kampeni yathu ya boma, chonde pitani kwathu Maudindo otsatsa ndi kulumikizana kwa mamembala page.
