Description
Rare Disease Day commemoration is jointly organized by Ali Kimara Rare Disease Foundation (AKRDF) and Tanzania Society of Human Genetics (TSHG).
The objectives of the commemoration are:
i. Take stock of the progress made since the last commemoration on recognition and inclusion of children with Rare Disease;
ii. Acknowledge and recognize individuals and institutions which have furthered the inclusion of Rare Disease children and their wellbeing;
iii. Scale up advocacy for the recognition and inclusion of Rare Disease children needs and rights as enshrined in the Call for Action;
iv. Promotion of public education on the Rare Diseases and family and community role in taking care of children with these diseases; and
v. Amplify Tanzania’s voice on the global Rare Disease movement.
The day is expected to be graced by a high-profile Guest of Honour to give a visibility to the cause. It will also bring together high-level policy makers from the Ministry of Health, Children, Education, Members of Parliament, Municipal Councils, Embassies and International Organizations, and medical fraternity from Mainland and Zanzibar. Also lined up are representatives from the private sector particularly insurance companies and owners of private and faith-based hospital and school facilities.
The commemoration will be preceded by a weeklong public campaign to raise public awareness. The activities will include the following:
i. Social Media Campaign ii. TV and Radio Interviews iii. Preparing a Documentary and iv. Football Match.Â
The Rare Disease Day commemoration in Tanzania will provide an opportunity to achieve two strategic gains. First, to wage a public awareness on the state and plight of the Rare Diseases in Tanzania. And second, to raise attention of political leadership and among policy makers on the necessity of inclusion of Rare Diseases into health and related government policies and programs.
Â