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 β at Dar es Salaam, Tanzania
Ali Kimara Rare Disease Foundation (AKRDF) retweeted
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.
Ali Kimara Rare Disease Foundation (AKRDF) retweeted
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.
Stepping into the teenage realm InshaAllah, with the birthday countdown in full swing! πβ¨
9th April loading..........
#13thbirthday
#birthdayloading
#TeenageJourney
#BirthdayCountdown
#SafariYaUjana
#rarediseasetz
Ali Kimara Rare Disease Foundation (AKRDF) retweeted
Replying to @sharifambarak1
@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!
Ali Kimara Rare Disease Foundation (AKRDF) retweeted
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.
Ali Kimara Rare Disease Foundation (AKRDF) retweeted
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 β at Dar es Salaam, Tanzania
Ali Kimara Rare Disease Foundation (AKRDF) retweeted
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.
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.
Ali Kimara Rare Disease Foundation (AKRDF) retweeted
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=jILqβ¦
#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.
Ali Kimara Rare Disease Foundation (AKRDF) retweeted
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.
Ali Kimara Rare Disease Foundation (AKRDF) retweeted
Rare Disease Day is an important opportunity to raise awareness about rare diseases and their impact on patients' lives #LightUpForRare
Ali Kimara Rare Disease Foundation (AKRDF) retweeted
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
Ali Kimara Rare Disease Foundation (AKRDF) retweeted
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.
Ali Kimara Rare Disease Foundation (AKRDF) retweeted
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
Ali Kimara Rare Disease Foundation (AKRDF) retweeted
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
Ali Kimara Rare Disease Foundation (AKRDF) retweeted
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)
Ali Kimara Rare Disease Foundation (AKRDF) retweeted
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
Ahsante sana.
@AchyLizzy
Ali Kimara Rare Disease Foundation (AKRDF) retweeted
Kongole na asante ziwafikie wadau wote mliotenga muda wenu kwa ajili ya kushiriki #ElimikaWikiendi ya leo kikamilifu.
Tunakutakia wikiendi mujarabu wewe na familia yako!




































