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

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 Rare Disease Day

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

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.

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

Kongole na asante ziwafikie wadau wote mliotenga muda wenu kwa ajili ya kushiriki #ElimikaWikiendi ya leo kikamilifu. Tunakutakia wikiendi mujarabu wewe na familia yako!

Ali Kimara Rare Disease Foundation (AKRDF) Holy Big up kido

Ahsante sana. Elizabeth Achilles Ndyalusa

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

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)

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 Ali Kimara Rare Disease Foundation (AKRDF). Leo tunapoadhimisha #RareDiseaseDay2024 tunajivunia pamoja na Ali

We have to be aware of this🙌💯 #RareDiseaseDay Ali Kimara Rare Disease Foundation (AKRDF)

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 Muhimbili University 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.

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.

Tafiti ndio chachu ya ujumuishwaji wa waishio na #magonjwaadimu nchini, Kwa waathirika na familia zao, hamkujichagua bali mmechaguliwa. #2024RareDiseaseDayTz Togolani Mavura Francis Furia Muhimbili University Rare Disease Day Ali Kimara Rare Disease Foundation (AKRDF) Wizara ya Afya Tanzania 🇹🇿 Wizara ya Elimu Tanzania Aysha Mbarak Al-Alawy

Naibu Makamu Mkuu wa Chuo Kikuu cha University of Dar es Salaam, 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

Kheri ya Kusherehekea siku yako ya Mfanano wa kuzaliwa Mdogo wangu Ali Kimara Rare Disease Foundation (AKRDF) , 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.

Sharifa 🇹🇿 Ali Kimara Rare Disease Foundation (AKRDF) 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

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