Ƙungiyar Ƙarƙashin Ƙarƙashi

The Skeletal Dysplasia Alliance kungiya ce da aka sadaukar don ba da shawara ga mutane da ke da yanayi kamar achondroplasia da sauran dysplasias na kwarangwal tare da dwarfism (ASDD) a duk faɗin Turai. A cikin mahallin ci gaban duniya wajen fahimtar haƙƙin mutanen da ke da nakasa, kawancen ya jaddada cewa bukatun musamman na al'ummar ASDD waɗanda aka yi watsi da su a tarihi.

Kungiyar ta hada kai da kungiyoyi daban-daban don magance kalubalen da mutane da ASDD ke fuskanta a Turai. Duk da ci gaba a cikin manufofin nakasassu na EU, har yanzu akwai gibin da aka lura a cikin amincewa da magance takamaiman bukatun wannan al'umma da aka nuna. Sanarwar yarjejeniya da kawancen ya gabatar ta zama kira ga aiki, yana roƙon Tarayyar Turai ta saurari muryoyin mutanen da ke da ASDD kuma ta aiwatar da ainihin mafita na dindindin. Kungiyar ta yi la'akari da 'Yuropa ta zamantakewa' wacce ke kafa ka'idoji na kowa, tana inganta hadin kai, kuma tana kawo canji ga mutane tare da ASDD.

 Tarihi 
A cikin 2020, kungiyoyi bakwai da ke wakiltar mutane da ke fama da achondroplasia da sauran dysplasias na kwarangwal daga kasashe daban-daban na Turai sun yanke shawarar yin hadin gwiwa a kan aikin bayar da shawarwari. Manufar su ita ce inganta tattaunawar da ake watsi da ita akai-akai game da bukatun da ƙalubalen mutanen da ke da gajeren matsayi, a cikin manufofin EU da kuma matakin ƙasa. Sun kirkiro takardar yarjejeniya da ke magance halin da ASDD ke ciki a Turai da kuma ba da shawarar matakan siyasa don ingantawa.

Takardar yarjejeniya ta zama dutse mai tushe don bayar da shawarwari kan dysplasias na kwarangwal, nazarin cikakkun bukatun waɗannan yanayi, gami da batutuwan da suka shafi zargi, kiwon lafiya, kariya ta zamantakewa, da shingen ilimi da aiki. A watan Nuwamba na 2021, kungiyar SD ta gabatar da sanarwa a wani taron hukuma tare da goyon bayan wakilai biyar daga Majalisar Tarayyar Turai da Hukumar Tarayyar Tarayyar. Gabatarwar ta jaddada bukatar tattaunawa ta siyasa da zamantakewa don ragewa da shawo kan kalubalen da mutanen da abin ya shafa ke fuskanta. Don wannan dalili, kawancen ya yi imanin cewa hadin gwiwa, kokarin da kungiyoyin ASDD ke yi na da muhimmanci.

 Rashin kwarangwal 
Skeletal dysplasias (SD), ko osteochondrodysplasias, sun ƙunshi yanayi sama da 450 da ba a saba gani ba da ke da alaƙa da cututtukan ƙashi da ƙashi, wanda ke haifar da matakai daban-daban na gajeren tsayi. Duk da yake kowane takamaiman dysplasia na kwarangwal ba sabon abu ba ne, gaba ɗaya, abin da ya faru kusan kusan 1 ne cikin 5000.[1]￼

Daga cikin waɗannan yanayi, achondroplasia shine mafi yaduwa, yana faruwa a kusan 1 cikin 20,000-30,000 haihuwa masu rai. A halin yanzu, kusan mutane 250,000 a duk duniya suna fama da wannan bambancin.

Duk da yake yawancin lokuta suna bayyane a lokacin haihuwa, wasu suna samun ganewar asali a lokacin jariri. Jarirai da ke fama da achondroplasia sau da yawa suna nuna bambancin nau'ikan gaɓoɓin, gami da bambancin kai, kirji, da girman hannu. A lokacin da ya girma, matsakaicin tsawo ga maza tare da achondroplasia shine 131 cm, yayin da mata yawanci ke auna 124 cm.

 Ƙungiyoyin 'yan uwa 

 Bundesverband Kleinwüchsige Menschen und ihre Familien (Jamus) 
 Belangenvereniging van Kleine Mensen (Netherlands) 
 Gidauniyar Binciken Skeletal Dysplasia Tare (FEST) (United Kingdom) 
 Gidauniyar Alpe Acondroplasia (Spain) 
 Ƙungiyar Ƙananan Mutane (Faransa) 
 Ƙananan Mutanen Bulgaria (Bulgaria) 
 Palcekovia (Slovakia) 

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