Ali Kimara Rare Disease Foundation (AKRDF)

Children with rare diseases didn't know how to be strong until being strong is the only choice that they have. They are special and need love, support, recognition and education. 2020 - please join them to raise their voices! #alikimarararedisease

Nimefanya mazungumzo na Wataalam kutoka Dohwa Engineering Co. Ltd wanaojiandaa kwenda nchini Tanzania kwa ajili ya kufanya upembuzi yakinifu wa ujenzi wa Bandari ya Uvuvi, Zanzibar. Upembuzi yakinifu huo unafadhiliwa na Korea Cooperative Supporting Centre for Overseas Port Development (KCSC). DOHWA ni kampuni kiongozi nchini Korea kwa kazi za usanifu na kihandisi. Nawashukuru Wizara ya @WUBU_Zanzibar kwa ushirikiano waliotupatia uliowezesha kupatikana fedha kwa ajili ya upembuzi yakinifu.

@WelBeast The Club above all......The fans are bleeding green and yellow.

Yanga SC trophy parade in Dar es Salaam Tanzania. Congratulations Jirani

Kheri ya Kusherehekea siku yako ya Mfanano wa kuzaliwa Mdogo wangu @AliKimara , Mwenyezi Mungu Akupe Miaka Mingi Na Kheri Duniani. Wewe ni mmoja kati ya watu ambao Maisha yao hapa Duniani yamejaa hadithi nzuri sana inayoweza kusimuliwa kwa kila rika.

@AliKimara ni kielezo cha nguvu ya matumaini, subira na imani katika maisha. Maisha yako ni sauti na alama ya mapambano ya wahanga wa #RareDiseases. Kupitia harakati zako, leo watoto wenye #RareDiseases wanasajiliwa na kuruhusiwa kusomea elimu yao wakiwa nyumbani. Heri ya siku ya kuzaliwa shujaa!

Naibu Makamu Mkuu wa Chuo Kikuu cha @UdsmOfficial, Prof. Bernadeta Killian na ujumbe wake, wamekutana na watumishi wa Chuo Kikuu cha Dar es Salaam walioko masomoni nchini Korea katika Ubalozi wa @TanzaniaInKorea jana. Ubalozi ulifarijika kuwaunganisha na kuwa sehemu ya mkutano huo. Prof. Killian alipokea maoni yao kuhusu mchakato wa Maboresho ya Chuo Kikuu cha Dar es Salaam yanayoendelea, na pia uzoefu wao wa kusoma katika mfumo wa elimu ya juu wa Korea. Watanzania walioko katika vyuo vikuu nchini Korea ni hazina kubwa ya taarifa na anuani muhimu zinazotusaidia Ubalozi kutambua fursa zilizopo, ikizingatiwa kuwa kuna mwingiliano mkubwa wenye afya kati ya Vyuo Vikuu, Sekta Binafsi na Serikali nchini Korea.

Tafiti ndio chachu ya ujumuishwaji wa waishio na #magonjwaadimu nchini, Kwa waathirika na familia zao, hamkujichagua bali mmechaguliwa. #2024RareDiseaseDayTz @tonytogolani @furia_francis @muhimbiliuniver @rarediseaseday @AliKimara @wizara_afyatz @wizara_elimuTz @3ashou

Kwa waathirika wa #magonjwaadimu na familia zao, hii ni siku adhimu. Kumbukeni, mmepata majaribu haya, lakini hamkujichagulia, mmechaguliwa. Mmekuwa mashujaa katika safari hii. Nawaombea wale wote walioondokewa na wapendwa wao kutokana na magonjwa adimu.

Tunaendelea kutoa elimu juu ya #MagonjwaAdimu "Sisi kama ulimwengu, tunaona ni adimu, lakini kwa wanafamilia wenye mtoto mwenye ugonjwa adimu, wanaona ni ulimwengu mzima uko pale ....." Prof. Manji, MUHAS. Tazama zaidi: youtu.be/Xgakm6jd4gM?si… #RareDiseases #THGO #MUHAS

Taasisi ya AKRDF & MUHAS @muhimbiliuniver tumeungana kuadhimisha Siku ya Magonjwa Adimu tarehe 29 Februari, saa 1 jioni. Taa za matumaini ziliwaka katika jengo la MUHAS, ikiwa ni ishara ya dhamira yetu ya kuendelea kushirikiana kuleta mwangaza kwenye utafiti wa magonjwa adimu.

Namshukuru Ali Kimara, mtoto anayeishi na #UgonjwaAdimu kwa kunifundisha somo la matumaini. Sababu ya Ali nilijiunga na harakati za kupigania maslahi ya wanaoishi na magonjwa adimu kupitia taasisi ya @AliKimara. Leo tunapoadhimisha #RareDiseaseDay2024 tunajivunia pamoja na Ali Kimara na wenzake juu ya mafanikio makubwa yaliyopatikana, ikiwemo: 1. Serikali kuanza kutoa huduma ya elimu majumbani (home schooling) kwa watoto wanaoishi na magonjwa adimu ambalo Ali Kimara amekuwa mtoto wa kwanza kitaifa kuandikishwa; 2. Serikali kuwatambua Watoto wenye Magonjwa Adimu katika Sera Mpya ya Elimu kwa Watoto Wenye Mahitaji Maalum; na 3. Kuanzishwa kwa Mfuko wa Utafiti wa Magonjwa Adimu kwa ushirikiano kati ya @AliKimara na @muhimbiliuniver. Shukran za kipekee ziwaendee Mhe. Rais @SuluhuSamia, Timu ya @YoungAfricansSC na #GSM kwa kuwa wachangiaji wa kwanza ambao fedha zao zimewezesha kuanzishwa kwa Mfuko huo. Shukrani za kipekee ziwaendee @DewjiFoundation @moodewji @CRDBBankPlc @scitanzania, Aga Khan Hospital Dar es Salaam na Serena Hotel Dar es Salaam kwa kutuunga mkono katika maadhimisho ya #RareDiseaseDay mwaka 2020 na 2021 yaliyozaa matunda haya tunayojivunia. Kilicho mbele yetu sana ni kushawishi kuongezekwa kwa tafiti za Magonjwa Adimu nchini ili zisaidie kubaini wahitaji, mahitaji na uwekezaji unaohitajika.

We have to be aware of this🙌💯 #RareDiseaseDay @AliKimara

Rare Disease Day is an important opportunity to raise awareness about rare diseases and their impact on patients' lives #LightUpForRare

This calls for an urgent need to utilise different platforms and forums such as the commemoration of rare diseases day to engage different stakeholders including the government to raise awareness. #ElimikaWikiendi #RareDiseaseDay #RareDiseaseDay2023

In order to improve the quality of lives of children/individuals with #RareDisease in Tanzania, increased public awareness and engagement are urgently needed together with appropriate policies, and treatment and supportive care systems.

In Tanzania, management and care of patients with #RareDisease result in unbearable financial burden particularly to the families and close relatives. It has been noted that the health insurance schemes currently operating in Tanzania do not or partially support patients with RDs

Currently, there are no established therapies for most of the RDs in Tanzania and for those with treatment, it is normally obtained from other countries, and it is generally expensive and out of reach for many patients. #RareDiseaseDay #ElimikaWikiendi @rarediseaseday

In the first picture from lef are Ms. Arafa Said of SCPCT, Ms. Fidelis Usio of Epilepsy organization of Tanzania, Dr. Daima Bukini, en expert of ELSI and Ms. Hajrrath Mohammed of Lupus Awareness and Support Foundation (LASF)

2nd THGO CONFERENCE Dr. Daima Bukini led a panel discussion with #RareDiseases warriors who shared their experiences accessing medical care in #Tanzania. #THGO2023 #HumanGenetics #HumanGeneticsTz #THGO2ndConference

@DonaldSungura @ElimikaWikiendi Amen amen. Ahsante sana tunashkuru

@AliKimara @ElimikaWikiendi Mungu azidi kumtunza na kumrejeshea Afya njema,Naamini ipo siku atasimama na kusimulia matendo makuu ya Mungu

Tofauti na wengine, hadi sasa, Ali hajaweza kupata utambuzi sahihi wa aina ya ugonjwa alionao. Pamoja na changamoto hiyo, Ali amefanya mtihani wa darasa la nne na amefaulu kwa alama za juu. Amefanyia mtihani akiwa hospitali. #ElimikaWikiendi #MagonjwaAdimu #RareDiseaseDay2023

Ahsante sana. @AchyLizzy