28 February 2019
Tanzania, Dar-Es-Salaam, Tanzania
Hosted by Ali Kimara Rare Disease Foundation and Jamoud Muneer
Ali Kimara Rare and Jamoud Muneer hosted the World RareDisease Day held the last day of February each year. World Rare Disease Day is an annual observance to raise awareness for 350 million people affected by rare disease globally.
Ali and Jamoud are the victims of rare disease, who at the age of 7 and 2 respectively have been through years of hardships that many adults have never even seen. One of the hardships they have faced in Tanzania is that rare diseases are not acknowledge as much as they should. This has meant that majorities of the rare diseases are unnoticed and hence are undiagnosed”.
Due such scenario Ms. Sharifa(Ali's Mother) and Ms Baome(Jamoud's Mother) have decided to champion for kids with rare diseases in order to support them in gaining education, medical attention and equal opportunity within the country and globally as there are so many children in Tanzania suffer from rare diseases, said that their own experiences had triggered them resolve to mobilize parents, patients with rare diseases and other like- minded citizens so as to create the necessary awareness and call the community to action.
During this event, we have brought together families of children with rare diseases, the media, health care professionals and policy makers and discussed the unique problems faced by these children. We hope we have raised awareness about these conditions and the challenges in their diagnosis and treatment. We have also discussed ways in which to improve care and provide support to the affected children and their families as it was the high time that Tanzanians became aware of rare diseases so that they can know how to handle them in case they encounter them in the community.
In 2016, together with stakeholder one in health sector Ms. Monica Joseph created an awareness during Rare Disease Day in Tanzania so that they can know how to handle them in case they encounter them in the community.